CCDC Person of the Month
Scott LaBarre is our April person of the month as we celebrate Section 504 of the 1973 rehabilitation act. As Scott says, 504 is important as a piece of our civil rights protection. He says that we need to understand what came before, which included work by constitutional scholar and Founder of the National Federation of the Blind Jacobus tenBroek http://www.blind.net/who-are-the-blind-who-lead-the-blind/dr-jacobus-tenbroek-1916-to-1968.html who tried to get disability included in the 1964 Civil Rights Act; and what came after, which includes both Section 508 (accessibility of electronic communication and equipment within the federal government), the ADA and more.
Scott wears many important hats. He is the owner of his law firm, the President of the Colorado Chapter of the National Federation of the Blind, www.nfbco.org, and he is a national leader within the NFB, https://www.nfb.org. Most importantly, he is a husband and father.
Scott went to college planning to go into international business. He received a scholarship from NFB for college and emerged with a goal of going to law school. He chose law as a career because he wanted something that would give him freedom and the ability to make an impact. He graduated from the University of Minnesota Law School in 1993 and was fortunate to be able to work with Dr. Jernigan (http://en.wikipedia.org/wiki/Kenneth_Jernigan) the former leader of the NFB in Baltimore for a couple years. He then relocated to Colorado where he has made his home. Scott is happily married to Anahit, who is also blind and originally from Armenia. They have two wonderful happy and healthy children --Alexander age 11 and Emily age 9.
Scott was born and raised in the Twin Cities area of Minnesota. He became blind at age 10 and was fortunate to get the training and support he needed quickly, followed by a good education. He learned Braille and how to use a cane quickly. Missing however, were good blind role models, something that is very important for all of us with disabilities and something that the NFB now provides to their young very, very well.
The National Federation of the Blind of Colorado is an organization that CCDC has long admired. They do an amazing job of advocacy and teaching blind people to live fully and independently and empowering blind people of all ages. The Colorado Center for the Blind, http://coloradocenterfortheblind.org/ one of three teaching centers in the country, runs a confidence camp for little kids, a program for senior citizens and programs for everyone in between. They get results! Their services leave blind people independently able to use public transportation, able to read, write and use technology, able to cook, use power tools and go rock climbing or do whatever it is they want to do. I asked how the NFB has been so successful, particularly with empowerment of young people. Scott said that the NFB has been fortunate to have some very strong leaders who not only dealt with what was in front of them but thought about the future. In the early 80’s the federation went from giving one national scholarship each year to offering 30. This spawned a proliferation of more scholarships at the state level. The scholarship program was how Scott himself got involved. This program continues to be a vehicle for many other leaders continue to emerge. Scott said that the NFB knows that it is easier to be successful if you get training and resources early AND have a positive philosophy. What distinguishes NFB from the hundreds of other "youth programs" and thousands of other "rehab" services is not only the empowering philosophy but showing blind people of all ages that they can achieve their goals, they can have a fulfilling life, whether that is educational pursuits, employment, raising a family or all of the above. They demonstrate this by using blind instructors for their programs. Blind people are the ones at the Colorado Center showing the students how to cook, how to use transit, how to use a power tool or how to research the law using screen reader technology. This is the epitome of "nothing about us without us". Not surprisingly when NFB started their model the traditional rehabilitation professionals strongly opposed it. Today other programs try to mimic what NFB does and tell potential customers that they use the NFB model.
Scott uses section 504 daily in his busy law practice. He cautions us that laws are just words on paper and do no good unless they are enforced and understood. That is the struggle that we are still in and it will take a long time before people realize that having a disability is not a presumably inferior lifestyle, but simply another life experience. All of us in life must adapt to changes in life circumstances. Disability is simply a different way of experiencing the human condition.
However any law is only as good as the enforcement . We have to address compliance on so many fronts. We bite off as much as we can legally, we work on cases that make difference and set precedent. He reminds us that we cannot rely on litigation alone. We must use legal strategies hand in hand in hand with legislative reform. This includes state level work, such as reforming the Colorado Anti Discrimination ACT (CADA) (SB 14-118 this year) to making tweaks or fighting off assaults on ADA and 504. Scott says we also must continue to do public outreach. He says that if someone is an employer has contact with people with disabilities who are positive and get good education they will think about hiring someone with a disability.
It is not all about other people however, Scott says that we have internal work to do in our own community. Some of us do not have high expectations for ourselves. We must not allow ourselves to be relegated to a second class life. We have made a lot of progress as a disability rights movement but the worst thing we can do now is to stop. We need to keep moving forward and continue to plow ahead when we encounter resistance.
As mentioned, CCDC and the NFB have enjoyed a terrific working relationship over the years. Scott wanted to be clear that NFB is open to anyone. Their focus is on blindness but they welcome people with other disabilities. Many people who are blind also have other disabilities as well. Scott said that CCDC members are welcome to their meetings. I would personally recommend anyone with an interest to ask for a tour of their school in Littleton. It is a really cool experience. My hope for the broader disability community is that we can create a way to empower and educate our young people, and those "join our club" as adults that uses the successful model developed by NFB. If you want to experience true disability pride, empowerment, and engagement just show up at an NFB convention.
CCDC continues to benefit from our relationship with Scott and NFB and we appreciate his many contributions to disability rights.
Joelle Brouner, Colorado DVR Director
For "Nothing about us without us" month, CCDC is pleased to introduce Joelle Brouner. Joelle came to Colorado from Washington State in October to take on the massive job of directing our state Division of Vocational Rehabilitation, DVR . This important agency is charged with running vocational rehabilitation authorized in the Rehabilitation Act of 1973 . They also oversee our certified Centers for Independent Living Within VR there are a variety of programs and services. The main purpose of DVR is to help people with disabilities get jobs, keep jobs and maximize their employment potential.
Joelle heard about this job from a friend. In considering the move she knew that there were "issues" with our program. She considered the similarities between Washington and Colorado--for example the people of both states are rightfully proud of the natural beauty. Knowing there was a robust disability community in Colorado was a strong selling point. She has a heart for advocacy and believes strongly that being part of peer groups and engaging in disability culture is restorative.
In Washington she ran what was the equivalent of our State Rehab Council but the Washington program is much bigger. This job gave her a knowledge base of VR laws, regulations and best practices. One of the accomplishments of which she is most proud is that under her leadership the disability community and business community developed lasting relationships. She has a strong belief in VR as a program because she sees it as having the potential to help people transform their lives. VR is the least known program in the disability arena. Her goal is to bring the Colorado program to a place where DVR lives up to the spirit and promises of the Rehab Act. When asked what means, she said it is about people with disabilities getting jobs they want, with benefits they like at a rate of pay they can live on....she says it is about turning equal opportunity into opportunity realized.
In the disability arena we often talk about "Nothing about us without us" and bemoan the fact that most people who run programs do not know what it is like to be a client, let alone know anything about disability. Joelle lives with a disability, cerebral palsy and knows what it is like to be a VR client. She first became a client of VR in Washington at 18. She was college bound due to determined and supportive parents. She did not know what to ask for nor did she understand why she was being tested. The counselor wanted her to be a cake decorator...something not in keeping with her skills or interests and a silly choice for someone with manual dexterity issues. She had that case closed for "failure to cooperate". She went to college, originally had a career as a community organizer, and then decided consciously to work in government.
This is the next juncture where she lived "nothing about us without us". She specifically chose to work in government because she believes that we can achieve more together than by ourselves. This is not just about the disability community, but the community at large. She takes great pride in being a government employee with a disability. We have always been on the outside and have not had people in enough leadership roles inside the system. . She wanted to be part of a new wave of people who can make meaningful change from within. Joelle has a lot of pride in what DVR can be and explained the three proud traditions of DVR.
1) Excellence in guidance and counseling. This is the core service they offer. When done property it helps people understand and tap into their full potential.
2) Great Society Measures of Lyndon B Johnson -following in the history of not being afraid to have a big idea and penetrate the impossible. For most of our history fair housing and civil rights were considered impossible. Now we need to see real employment as possible. She likes the term “civil service” and feels genuinely honored to be able to serve her fellow Coloradoans.
3) The proud tradition of disability rights: She sees the disability rights movement as essential to DVR and says it is important to understand where that fits in history of modern rehabilitation.
Her disability pride is palpable. She glows with excitement when talking about our history and heroes. She was born around the time when the rehab act became law and graduated high school as the ADA was signed. She sees how she has benefited form the legacy of advocacy and wants to build on that legacy. She talks about how as a disability community we must never negotiate away our self-respect. She says that we can negotiate issues and positions but not our self-respect. She says we should never come to the table to seek approval for who are. She feels it is imperative to model that self-respect to our younger members.
Her early "failed" case as a DVR client gives her empathy for those who say the system does not work and fills her with passion to help make it work better. She did learn from that process however, and went back to DVR just last year to maximize her employability. Her case was a successful closure when she got her current job--running DVR for the state of Colorado. Therefore she is a DVR success story! So she also knows from personal experience that it can work and has seen the benefits.
She also believes that nothing about us without us means that we need to have the resources so that we can make choices about our lives. Helping people maximize their talents and enter the workforce is good strategy to help our community develop more resources. The next wave of the disability rights movement must be to get out of the deep poverty that plagues us today. We asked for her advice for people who have the very real fear (often from direct experience) that working will cause problems such as overpayments, benefits hassles, etc. She said that fear is something to acknowledge and respect. She said that fear may be where you start, but need not be where you finish. She suggested to look at benefits planning, learn as much as you can about systems and to explore what might be new since you tried last. She said we now have Medicaid buy in, the Affordable Care Act and other avenues that might not have been available in the past. She reminded people to use the great advocacy we have in place if there are problems. She urges people to get out and figure out what your work tolerance is, what accommodations you might need, and most importantly what you are good at and what you like to do. She said that the worst outcome is to have more generations of people with disabilities languishing in poverty.
Joelle says that the boldest statement a person can make is to say "I have talent ...I want to go to work...I am not sure how but I will make it happen." She realizes that some people have not had good experiences with DVR and hopes that the program will earn the trust of our community based on practice and performance. If her first six months are any indication we will not be disappointed! The program has not been able to take new clients for a long time, and had many other problems that she inherited. She has already addressed many problems identified in a scathing audit (problems created before her arrival) such as making sure that clients eligibility is processed timely and that counselors communicate regularly with clients. Because of her amazing work clients are starting to come off the waiting list.
Her vision for DVR is that people will be able to come here, get useful information and supports to become employed or maximize employability. She says that the magical moment is when someone with a disability realizes that he or she can do something once thought impossible. Once that realization is fulfilled the possibilities and potential snowballs into limitless opportunity.
She says that as a community we need to come together for economic advancement, both to change policies and to help each other manage the fears and stress. Disability is a management task--and it is not easy or seamless even though there is sometimes pressure to make it look that way. It will take intention and will not "just happen" just as getting our civil rights and access to community services took a lot of coordinated effort. Joelle says the most radical thing we can do as individuals and as a disability community is to not just survive but to thrive.
We welcome Joelle to Colorado and to our community and look forward to working with her to realize our mutual goals of economic advancement and increased employment within our very talented community.
Photo of Joelle from an Article by Robert Lawhead at the following link below:
February is Systems Change Month-systems change is at the heart of what we do at Colorado Cross-Disability Coalition (CCDC). Systems change is an American tradition. When we do it like what we have in this country we change it. Sometimes that means changing laws, other times it means changing rules. Sometimes it means creating a program, but often it can mean changing a program. We change systems when we realize that the problems that individuals experience are not caused by the deficit of the individuals – but by dysfunction in the system. There are many ways to change systems – CCDC is proud to honor Roxane White as our February person of the month. She is currently the Chief of Staff for Governor Hickenlooper and she considers this the ultimate chance to change and improve systems. Roxane has dedicated her life to making systems better and she believes that a good government is a government that is honest, transparent and responsive to the needs of the people.
Roxane grew up in Montana. When she lost her father at an early age, she learned that life can throw up challenges one does not expect and cannot control. That was a major influence in her life. She ended up getting a Master's degree in both Social Work and Divinity and she initially had planned to be a minister, but learned that her skill set was more suited towards high level management. Roxane, like many of us, was focused on changing the system through the work she did with non-profit organizations. She spent many years working for homeless youth and was the director of Urban Peak.
I remember when I was a new director of CCDC, and was seeking advice on how to run a non-profit with integrity…in ways that would produces real change, I was told to watch the woman who was running Urban Peak – I was told that she ran a model organization and that is when I first met her. She was kind enough to share information with me as a new director. Since then, our paths have crossed throughout the years – most recently in her role as Chief of Staff for our Governor.
While running Urban Peak, she was doing what we advocates do – pushing on an elected official about issues she believed in. Her particular issue was support for the homelessness youth. Then Mayor Hickenlooper challenged her. He said, "Roxane, you can continue to do the work you are doing and complain about how our systems leave behind the most vulnerable. And, I guarantee you that 20 years from now, you will still be saying these things, or you can join my administration and try to create change and access." Roxane feels blessed to have been the head of Denver Human Services and to create Denver's Road Home under his administration and later to become the Chief of Staff. It was a natural move to expand her reach from city to state issues when he was elected Governor. She felt that she had an opportunity to continue to have a voice for important issues such as the waiting list for people with disabilities, homelessness, responsible fiscal planning, and emergency response.
As advocates we wonder if the people that work in the "the system" really want our involvement. We know that Roxane genuinely values our involvement and the involvement of all citizens. She believes that citizen advocacy is the key to systemic change. She knows that personal experience leads to better laws, rules, and services. More importantly, she said that unless people are involved, challenges, issues, concerns and areas for improvement are never fully understood or considered. It is important that someone so influential in our state believes so much in systems change…in real and meaningful community engagement.
In fact, her desire for systemic is why she accepted the challenge from Governor Hickenlooper. Roxane said that "creating change was absolutely why I changed careers. I felt that my skills could help by working within government for a few years. I never aspired to these roles, but I have been fortunate to be in a position where I can advocate for the needs of people throughout Colorado. As the stepparent of a child with disabilities and as a foster mother, I know well how people can be left out of our systems or how we can create structures that support people to fully engage, to have meaningful work and to fully participate."
Roxane feels fortunate to have obtained positions of influence. She feels it is her duty to use her voice for those who are often not heard, including but not limited to those who lack a stable residence, teens struggling to survive on the streets, and others for whom daily life is all consuming. She does not see people who are disenfranchised as helpless victims and works to help people get in a place where they can speak for themselves – she absolutely sees her role as effecting change to make our state a better place for everyone.
I asked her, “What does a Chief of Staff do?” She said that her job is to manage the daily functioning of the State of Colorado for the Governor. The heads of all state agencies report to her and she works on budget, legislative issues, and strategy. She reviews and recommends items for the Governor to consider. Both a fun aspect and a challenge of this job – is the sheer number and diversity of issues that confront her on a daily basis. On a given day, she may work on tax policy, marijuana regulation, prison reform, and health care. On another day, she is focused on the unique issues which are facing rural Colorado, such as the drought or mining problems. “It is important to always keep in mind the diverse needs of the entire state, she said.”
Her greatest source of pride in her current job has been her role in helping the state become more fiscally sound. She says when our fiscal house is not in order, it is impossible to be the best possible community. Because we have focused on the financial health of Colorado such as increasing jobs, we are able to focus on more of the needs of the State. Being able to advocate for additional housing for people, to eliminate more of the waiting list for people with disabilities, to increase opportunities for all people to work are highlights of the work.
CCDC agrees with this approach – we certainly would not have seen a budget initiative to address the Supported Living Services (SLS) waiting list as we have seen in the Governor's budget this year. Our personal care workers would not have gotten their 8.2% raise last year, if our fiscal house was not in order. While not all changes require additional funds and many of the changes sought by our community simply seek to redirect existing fun, our experience is that when there is a fiscal crisis it is much more difficult to get any sort of momentum or attention for policy change.
When she was asked what advise she could give for advocates working outside the government that want to make positive change, she responded as follows: "People are human beings regardless of where they work.
Most people want to understand and do the right thing. How we treat one another matters and it matters deeply. When I approached with the desire to solve a problem, I am able to immediately engage."
CCDC also believes that meaningful engagement occurs when all parties listen, share and take action together. Thank you Roxane for always listening and helping us take action to reach our mutual goals to make Colorado the best state in the country for people with all types of disabilities.
Haven Rohnert is our person of the month for January. January is Independent Living Month and Haven personifies what the Independent Living Movement is all about. Haven recently got his GED—with flying colors—scoring at the 96th percentile in writing and 93rd in reading. He is planning to go to college. In addition to this he works part time at a local grocery store, and owns a small business with his mother called The Body Restore . Haven is a proud single parent and has two boys, age 13 and 15. Haven has accomplished a lot in his life, but clearly has an eye for the future. He will be 37 on January 17, 2014.
Haven wants to improve his life, not to denounce his disability. Watching Haven make continual improvements over the years has been an incredible gift to me as an advocate. He came in recently and said he had a Christmas present for me and it was the best possible gift—it was a copy of his GED Diploma!! !
I have known Haven for about seven years. When I first met Haven he came to us for assistance getting on benefits—he had just left a bad situation and was on his own as an adult with a disability for the first time. He was struggling to say the least. From the first day, Haven has been the perfect advocacy client—he has taken everything he has learned from advocacy and increased his independence continually. He always follows through and always pays it forward. Now he is a business owner, has a GED, another part time job and to hear him talk —he is just getting started! However one job he has had and done well for the past 15 years is the one most important to him—being a parent.
Being a parent to Haven is as natural as breathing—being with his boys is and always has been something he loves, and relating to them comes naturally. Most people think parenting is anything but easy—and Haven admitted that it was a lot of work, but that any work, and even any pain was so overshadowed by the love he has for his children that he did not even think about parenting, but just did it. Haven said, “I love my children so much that I really don’t think about all the work and everything I have to do to keep up with things, it’s just something I do. I am very compassionate about all people and I will never give up on what I love.” All you have to do is to hear him talk about his boys and you know that he does love them unconditionally. He fought for them, at one time because of his disability his ex-wife tried to stop him from having his kids overnight and tried to convince the court that because he has seizures he should only be allowed supervised visitation. Haven left high school shortly after starting the 10th grade. Without the advantage of a complete childhood education or any formal education, Haven took on a challenging custody battle. As a result, Haven and his children are together. As people in the disability community know, absence of disability is NOT a requirement for being a great parent.
Haven credits his boys with helping him—he says because of them he could not fall into a major depression. Some of that is just practical—as a single parent someone had to get up and take them to school, assure homework is completed, and make their meals. Forcing himself to do what his boys needed helped him get through some of his most challenging, trying times. However, he realized he needed to do and be more and wanted to be a role model to his boys. Haven got on benefits and was able to get the medical care he needed to stabilize himself and as soon as it was possible he immediately began his quest for improvement.
I say “improvement” not “self-improvement” because for Haven this is all ultimately about making the world a better place. One of the biggest influencers in his life was Martin Luther King Jr. and he thinks of Dr. King’s legend any time he hears someone grumble that there is no sense trying because no one can change the world. To Haven Independent Living means having the time and resources to do what he wants—which is to make the world a better place. He hopes to get involved in politics some day and definitely sees the value in advocacy. He credits advocacy with assisting him not only with obtaining what he needed to get to the next level, but in helping him stand up for himself, a skill he has used and carried into other aspects of his life. He believes that everyone who struggles needs an advocate, and would like to see broad based advocacy expand and be available for people with and without disabilities.
In addition to that piece of paper that says Haven Rohnert has a high school equivalency degree, what he got from that process was increased self-confidence. He did not know if he would succeed and the fact that he did gives him confidence to try other things. He has always loved music, both playing and listening. He now wants to take that skill to a new level and is going to learn how to read music. Being able to play professionally is one of his many goals.
Haven got interested in his business at the Taste of Colorado in 2009. He saw someone selling aromatherapy gems and the idea came to him to create his own line of personal care and aromatherapy products. He has always loved fragrances, candles and the like. He shared the idea with his mother and then received a back payment from Social Security. He invested that money, and started a PASS (Plan to Achieve Self Support) through the Social Security Administration and recruited his mother as a business partner. They have not looked back since. They generously have donated beautiful gift baskets to CCDC auctions and also donate 50% of their BeCause Product Line to CCDC.
Haven had seizures from childhood but they were not diagnosed and very rare. It was only once he was a young adult, at age 20, that his seizures became more disabling, going from “absence” seizures to grand mal or clonic tonic seizures. Haven recalls many times waking up in some emergency room thinking that he had to make some kind of change. He credits having a disability with motivating him to make a better life for himself, not just the GED and the job, but forcing himself to treat his body well and to avoid putting any kind of substance into it other than necessary medications. He also exercises, tries to keep to a regular sleep schedule and engages in healthy lifestyle practices as much as possible. Even maintaining his health comes from an altruistic motive; he was always eager to help others. His mother, a wise and supportive influence in his life, told him that if he wanted to help others he needed to help himself first. He has found this to be true and now he is so much better able to help others.
We asked Haven what advice he would give to someone who was in the situation he was in when he came to us—new at Independent Living, trying to figure out how to get on benefits, a lot of things going wrong in life, and not a lot of self- confidence: His recommendation is to always keep moving forward: Get on benefits and use them to stabilize your life, get the medical care you need, make healthy choices. However, once you start to feel better don’t stay there—he went back to work for a very pragmatic reason—he0 did not want to be poor for the rest of his life.
CCDC is proud to consider Haven a member and know that he will continue to move forward.
Robert and Traci Brennan
Our December person of the month is a couple, Robert and Traci Brennan. The Brennan’s are going to be our first participants in a new CCDC advocacy program that will pilot in January 2014 focusing on advocacy for people with disabilities experiencing homelessness. I was lucky enough to meet this terrific couple over the summer when a Colorado Access Case Manager saw that they were in need of advocacy. At the time, they were experiencing homelessness. Fortunately, they have now been in an apartment for exactly one month, but the experience was traumatic enough that they want to spend time and energy to help change the situation for people with disabilities that are homeless.
The Brennan’s have been married for almost 13 years. Showing that you can find love anywhere, Traci went into a Walgreens to pick up a prescription in October of 2001. She had a friend who worked there and asked if they were hiring and was told sorry, that they were not hiring but her friend suggested she speak to the manager, who was Robert. Even though there were no apparent jobs he hired her—they fell in love quickly and were married within three months. They have been together ever since.
They come from New Hampshire. Traci has had multiple sclerosis for many years, but only recently became blind as a result of a particularly bad attack of optic neuritis in both eyes at the same time. Optic neuritis is a painful condition common in MS but rarely occurs in two eyes and rarely takes all vision. Traci first experienced this in 2008 and lost her vision in her right eye. She lost the rest of her vision, along with other worsening symptoms of MS in April of this year. The couple began to look at options for a better climate and better medical treatment. MS and humidity do not mix well, and it was likely that Traci would continue to deteriorate if she stayed on the east coast. They did extensive research and it appeared that Denver was the place to go---programs advertised that there was affordable housing and easy to access medical care. When they arrived it was a different story entirely.
They arrived to find a lack of housing, a requirement from most landlords that your income be three times whatever the rent was, and rents that were skyrocketing by the day. Fortunately Traci had SSI which transferred easily, and Social Security sent them to Human Services. Initially they were in Arapahoe County and had a caseworker who was helpful. (Apparently Arapahoe County ended the practice of assigning individual workers and now use a call center) They eventually landed in Denver. After realizing that quick housing was not going to happen they began calling shelters---there were no shelters that would accommodate a woman with a disability whose husband was needed to provide her care. There were shelters for substance abusers, battered women, and people with children. Despite the fact that they explained their situation not one shelter offered to make reasonable accommodations. This very common experience is why CCDC is starting an advocacy program for people who are homeless, the program will provide advocacy training for people willing to advocate for their peers and will support the group to work to push for implementation of disability friendly policies and compliance with disability rights laws into the metro area homeless services industry.
They were given lots of resources, called 211, called the places they were given by 211, and called 211 again. Most of the agencies they called could not help, had no more funding, did not help with housing, etc. There were a few notable exceptions. St. Vincent de Paul and the MS Society of Colorado were both very helpful and provided essential resources to the couple. Eventually they got into a program for couples through a program that is run by Denver Human Services and the Volunteers of America.
Just getting to that took self-advocacy. After yet another unsuccessful list from 211 they asked to speak to a supervisor, and then asked to speak to the supervisor’s supervisor. That individual connected with Denver Road Home and they were finally given some help through this program. They were initially told they could stay as long as they needed while they saved up for housing and waited on the numerous lists. About a month later someone Traci was enrolled in the home care allowance program. This program is not for people who have substantial needs, but for people who may need a little help, like with shopping, or errands. Once they got home care allowance and had an income of $1000 a month Denver Human Services felt that they should easily be able to find an apartment.
Traci says that there did not seem to be understanding that she needed an apartment with no steps, with air conditioning (heat sensitivity is a huge issue for most people with MS) and on a public transit line. Even though Traci was newly blind without mobility skills, the case workers kept telling Robert he needed to go get a job. No one told then that there was a way he COULD get a job as Traci’s caregiver—through the CDASS program. (This was the eventual solution that led them out of homelessness—no one told them about this until they were connected to CCDC). Many of the programs and services were closed off to them because to access services one needed to arrive early in the morning and wait outside for hours—an impossibility for someone with MS in the summer. Other programs required them to have a case manager to make a referral, but there was no help in getting a case manager. While at the VOA program they looked for housing and ways to improve their situation full time. They got a lot of wrong information and misinformation and as newcomers had a hard time knowing who to believe. During this dark time there were some absolute bright spots.
One was their case manager from Colorado Access, a strong advocate and emotional support for both Traci and Robert. They got this case manager through the Regional Care Coordination Organization (RCCO). She was a behavioral health worker (Traci had sought counseling to deal with the loss of her vision and MS related depression) but did whatever the couple needed, and did not limit her work to mental health issues. It was this case manager that referred them to CCDC. She attended meetings and appointments with them, helped with paperwork, and did whatever it took to make things work. She really helped the process of Traci getting on CDASS and hiring Robert as her caregiver by running paperwork around and finding a doctor to sign necessary documents.
Another resource that gave them not only practical help but met spiritual and emotional needs was the Mean Streets Ministry. The ministry, which works with homeless people up and down East and West Colfax, provided them with mentors and made them feel welcomed. Traci and Robert both said that being homeless is an emotionally devastating experience because you are treated as if you are invisible by some, blamed for your situation by others, and made to feel less than human and unwelcome by most service providers. They said that one “program” they were offered were free bus tickets back to New Hampshire—the message being “we do not want you here”. The folks from Mean Street Ministry welcomed them and let them know that they were absolutely welcome in Denver and provided much needed spiritual comfort.
When asked what should change about the homeless service industry they had some great ideas.
First, provide one case manager that can provide people with accurate information and that can focus on all needs. Once they got the case manager from Colorado Access it was really helpful to have someone to call to get accurate information. Even though homelessness was not her area of expertise, she was willing to figure out accurate information. They describe talking to one agency, whose website said that they provided a specific type of assistance. The agency representative indignantly asked why they thought they could get this assistance and when the Brennan’s told her that it was from her own website, the representative did not even apologize, but continued to insist that they did NOT provide that service.
However, most important, they said was to put the human back in human services. Remove the barriers that prevent you from being able to make direct calls to individuals. The system, they observe, is fraught with defeat, and inconsistency, and has lost human decency.
When asked what advice would they give to people in their shoes they immediately said “do not allow them (people working in the system) to shame or dismiss you”. They said you have to advocate for yourself and that might mean calling someone several times to get an answer. Keep asking for supervisors and the supervisor of the supervisor and go up the chain at each agency. They said that everyone is so busy you need to be assertive to get through to any individual or agency. They advise people to find support systems that can help emotionally and spiritually. They said that peer support is super important. Most important they say—do not give up hope.
What is next for the Brennan’s now that this ordeal is behind them? In addition to actually obtaining the medical care for Traci that drove them to Colorado, they want to pay forward the help they have received. Traci said that she knows she cannot do a 9-5 job but wants to volunteer as she is able. They want to volunteer with the Mean Street Ministries and CCDC.
We are thrilled to have the Brennan’s here and look forward to their participation in our new advocacy efforts focused on people with disabilities experiencing homelessness. On behalf of CCDC—welcome to Colorado and we hope you continue to make this your home. We can see that you absolutely belong here!!
October 2013, Brenda Mosby
Brenda began her own journey into disability almost 20 years ago. She was a successful suburban business owner, who had also enjoyed a career in banking. One day she did not feel well, then her vision got blurry in one eye and suddenly she lost her vision in that eye. Two weeks later she was completely blind. Doctors know it was a virus but they never figured out the cause. She was initially completely blind but has since gained some vision. Like most of us who become disabled, she initially experienced fear. She isolated herself, then tried to bargain with God. She begged for her vision back and offered to do anything in exchange for that. When this did not work she sought solace at a spiritual retreat. At this retreat she met a retired DVR (Division of Vocational Rehabilitation) counselor who urged Brenda to seek services through DVR.
DVR was a very positive and life changing experience for Brenda. After learning JAWS (computer program for people without vision) she then attended college. She went to Metro and initially was going to try to fin d a career around exercise, following a lifelong passion, but was so impressed with the rehabilitation counselors that helped her that she decided to become a counselor. She graduated with high honors and was the commencement speaker—she was not able to see the standing ovation she got for her speech “It is not what happens to you but what you do with what happens to you”.
After college she decided to attend graduate school to pursue her Masters’ in Rehabilitation Counseling. She was accepted to NYU and moved to New York. In addition to the academic education she received she learned how to travel. After graduate school she returned to Denver. Initially she worked doing classes for people who had DUI or problems with Domestic Violence but quickly realized her passion was about helping people with disabilities to succeed at employment.
When asked why employment was such as passion Brenda explained that employment affects so many areas of our life. She says once one is employed one has a different social standing. One has the ability to interact on many levels, such as with co-workers in and out of the office. She also points out that people who are employed are healthier. She is not sure if that is because people with jobs have the money to maintain better health habits and health care or because of the psychological benefits that come from knowing one is contributing and part of something. Brenda shared that having a job is a way to get all of us out of self centeredness and thrusts us into the world of others. Finally, she said that people with disabilities often forget about the need to play. It is something in our community we almost never speak of, likely because so few have the resources to engage in play. Having an income allows one the ability to afford the extras. This could mean enjoying expensive coffee with some friends, a day of skiing in the mountains or even a nice vacation.
We asked Brenda what she would say to someone who says that they just CANNOT work. She replied that each person needs to ask themselves what he or she wants in life and that it is important not to compare oneself with anyone else. If work is not what you want that is fine, but if it is there is a way to make it work. She reminds us that work is not always a traditional 8-5 job in an office. Some people may only be able to work a few hours a week but for those that want to work there is something out there. However, work may include volunteer work or attending to educational goals. She suggests that people examine your day to day life and determine if you are happy. If one is happy with their life there is no need to change it but if not she suggests that having someone examine your life with you can be helpful. Brenda said that when she was newly blind she felt that she was unable to do many things that she now knows she can do.
Because vocational rehabilitation counselors were such an instrumental part of Brenda’s adjustment to living well with a disability the current order of selection at DVR breaks her heart. The order of selection is what happens when there are not sufficient funds to serve everyone, as is the case now, and in that situation there is a waiting list to get DVR services. Brenda said that connecting with an agency like DVR can put you on path to build skills after disability She said that she thought she would never have an active life again, that she would just wither away and thanks in large part to DVR she was able to rebuild a new life. She saw that there were tools she could use to change her life.
Brenda has a life today that is fulfilling, awesome and fantastic. So when we asked her if she would take a cure if offered she said yes, but only if it were simple and she certainly would not wait for it. She said she knew of a procedure to replace corneas, that required multiple surgeries over two years. She would not want to put her life on hold for two years—but if there were a simple pill to restore her sight, yes she would take it. However, she would not have traded her experiences for anything. She has been able to touch peoples lives in a way she would never have been able to do as a sighted person. Brenda says that when she was sighted she was self-centered, even aggressive and she can say that because that is no longer who she is. She now knows that the most important thing is to perform Gods’ service. She does this by offering hope to others, and by teaching and showing people that they can indeed have a life after disability. As a spiritual being having had this very human experience Brenda realized she had all of the power in the world to shape her life. She uses this example when she counsels others. She realizes that she cannot (and should not) change others, but sees her role as giving others tools to do what they want to do in their own lives.
If you want to reach Brenda you can email her at email@example.com
September 2013, Henry Feldman
What does Labor Day have to do with this you may ask? Anything having to do with Social Security is laborious, but that is not the point. Henry has roots in the labor movement. In the summer of 1966, Henry was part of the National Farm Workers Association (NFWA) Student Summer Project. NFWA became the United Farm Workers that summer.
However, before and after law school, he drove a cab—Denver Yellow Cab to be precise. He joined the union and soon became shop steward. He also worked doing Viet Nam War draft counseling. In these contexts, he realized that legal advice usually contains within it some political analysis. When people suggested that he should think about driving a desk instead of a cab, he decided that he would rather be making the political analysis than receiving it. So off to law school inSan Franciscoit was. When he graduated and set up his practice his first client was the IDA-Independent Drivers Association—the cab drivers union! He recalls a time when he was at the airport and pointed out to his passenger that a fellow driver was the president of the company. His passenger was surprised but not as surprised as when Henry shared that he was the lawyer for all of the drivers.
During law school, which was in the California Bay Area, he was part of the
Unemployment Project of the Bay Area National Lawyers Guild. Law students represented people in appeals of denials of unemployment benefits. Somewhere along the line it became clear to Henry that unemployment and disability benefits were very important parts of the labor work towards which he was drawn. During law school he also worked in a Legal Aid office inPittsburg,California for 13 months. This was a great experience where he learned the basics of poverty law, including benefits work. This gave him much more broad perspective than most lawyers get and he developed expertise in the technicalities of administrative procedures related to government benefits. That was his introduction to Social Security Law, which eventually became his mainstay of his practice.
When he graduated from law school he came back toDenverand began driving a cab again, while setting up his practice. He started as a generalist doing everything from helping fellow drivers with tickets to family law. He proudly represented the cab drivers union. He did legal work for a Teamsters Local, the Aluminum, Brick, and Glass Workers, mushroom workers, Service Employees International Union and more. He was good at Social Security law and was on the Legal Services and other referral lists. By the time it was the early 1990’s he realized he had enough referrals to make a practice solely in disability benefits.
Disability work motivated him because he could do something concrete to help—he could prove that the client was entitled to benefits that were needed for survival. He realized that even though most of his clients with Social Security Disability benefit appeals did not identify with the disability rights movement that he should have some level of involvement with that movement. Not long after that realization (around 1990), he met Robin Stephens and Laura Hershey, through work on universal health care issues. They provided the best possible introduction to disability rights issues. Henry became a resource for CCDC in that time period and has been every since.
When asked what he would change if he could wave a magic wand and get one big change in the Social Security Disability Determination System he said he wishes for an adjudication system with a heart and soul. He said that the system has never been friendly, nor has it been terribly responsive. It has gotten much worse in the past five years, which is the driver in his decision to retire. There have been changes in the decisions coming from the Appeals Council that leads judges to demand more evidence along with hiring more insurance defense attorneys as ALJs. However, he believes that the most severe driver of the unpleasantness in the system comes from years of trying to starve the system administratively. The agency has been on hiring freezes for most of his career.
When asked what advice he had for a new lawyer he said that driving a cab was as important as law school in preparing him for his career. His advice to a young person is to have some real life experience before enrolling in law school,
Many CCDC members have directly benefited from Henry’s representation over the years. Many CCDC advocates have come to rely on his sound advice. What I most appreciate about Henry is that he does not take the view common to so many benefits attorneys that people with disabilities should stay helpless, and avoid work. He understands that the rules do not work, but that there is a long way between doing nothing and full time, competitive employment. He understands that we need a revolutionary change of mindset in the Social Security system. However, he urges us to remember that in the meantime there are things we can and should do to have fulfilling lives. For the decades of labor that Henry has given to our community—our broad community including people with disabilities, farm workers, cab drivers, and others, we say THANK YOU.
Chelsea Davenport is our August Person of the Month. The theme for this month is education and we chose to honor Chelsea, as she is a shining example of the outcome of a great education. Chelsea is a 24-year-old soon to be college graduate who has spent the summer at the Colorado Cross-Disability Coalition (CCDC) as our first ever Colorado College (CC) Public Interest Fellow. After completing one remaining course this fall, Chelsea will receive her Bachelors in psychology—a topic she chose given her love for working with and learning about people. While she has yet to make a firm decision about a career path, she hopes that it will involve something philanthropic. At this point, an ideal job for Chelsea might include working with children in the outdoors; she loves working with kids and feels most alive when she is outside and active. She will eventually go to graduate school but wants to gain more field experience first. Chelsea is a positive, polite, and well-spoken young woman who has been a terrific asset to us at CCDC this summer. She has created brochures (soon to be on our website), generated and improved development materials with Jerry, made a social media content calendar, and completed a variety of written documents for our organization (including a blog posted on our Sound Off! webpage). Her writing and verbal communication skills are excellent, as are her analytical and problem-solving abilities. She is the type of person any employer would love to have on their team.
Chelsea is very open about the fact that she has Obsessive Compulsive Disorder (OCD). She was diagnosed at a very young age (6) when her parents brought her to see a psychologist after they noticed some atypical behaviors. For example, Chelsea refused to use public swimming pools even though she loved to swim. Chelsea said that she rarely felt ashamed of her OCD as her family and friends were always incredibly supportive. Chelsea’s parents made her feel empowered and never burdened her with low expectations. They pointed out the unique, positive features of Chelsea’s disability while ensuring that she received the medical treatment necessary to address associated challenges. OCD always has been a part of what makes Chelsea who she is, but by no means defines her. Chelsea recalls a happy childhood and early adult life in which she blossomed academically and was involved in a myriad of extracurricular and social activities. She went to a Montessori elementary school, a private middle school, and a diverse public high school--all of which were located in Oklahoma. She came to Colorado in 2008 as an incoming freshman at Colorado College (CC) in Colorado Springs. During her tenure at CC, Chelsea had a terrific group of friends, interacted with fabulous faculty, and really thrived in an environment in which individuality and diversity were highly valued and encouraged. Chelsea has had a variety of strong mentors throughout her educational career and has never felt devalued as a person with a disability.
When asked about the importance of education for people with disabilities, Chelsea responded without hesitation that education is HUGE and that it opens many doors. She affirmed that intellectual stimulation is imperative because it fosters curiosity: “The more we learn, the more we want to learn”. She also asserted that one’s knowledgebase affects one’s worldview and she credited her education for her strong work-ethic, ability to study efficiently, and capacity to solve problems effectively–-all essential skills for independence that permeate into everyday life. Chelsea reflected about the confidence she gained from her coursework and the social flexibility she acquired through her involvement with diverse educational settings. One of Chelsea’s favorite teachers told his students that among the most valuable things one can take away from an education is to learn how to learn and how to think critically. Chelsea has taken full advantage of her strong academic background and urges young people with disabilities and their parents to make every effort to do the same.
Chelsea emphasizes the importance of remembering that a disability does not and should not define someone. Acknowledging those with disabilities for the same accomplishments that help identify their non-disabled peers is thus imperative to a comprehensive and grounded sense of self. Ignoring one’s disability would be short-sided, however, and ultimately detrimental for everyone involved. People with disabilities should remember that disability is indeed part of who they are, but that it need not, nor should not, define them completely. Chelsea warns young people to take caution with what they share and with whom. Her advice to parents of young people with disabilities is to watch their instinct to protect their children from stigma or other negative experiences. Fostering an open home environment in which teens feel comfortable communicating about what they may be experiencing at that point in time is instrumental to ensuring that they adopt a positive sense of self-worth. Communication is key when something challenging occurs and talking to your teen can be much more effective in the long-term than sheltering them. Chelsea reminds parents that children will need to grow up and negotiate the world independently, that we all learn from experiences, and that sometimes people must learn things the hard way in order for lessons to resonate.
Chelsea has clearly benefited from excellent parenting, a fabulous education, and a positive disposition. She is at one of the most exciting times in her life where the adventures of the world await her. We wish her luck and know that she will take with her everything she has learned while working at CCDC. Please visit our Sound Off! Page to learn more about the fabulous resources Chelsea has created during her summer with us.
Kathy Vincent is our July person of the month. If you have seen the movie “Born on the 4th of July” about a patriot fighter who came back disabled from Vietnam and used his situation to fight for the rights of others then Kathy is our version of this. Kathy was born on OUR independence day-July 26, but 50 years before we had civil rights. Kathy turned 50 on the day the ADA was signed into law.
Kathy was one of three children - all girls - and came from an amazing family. Her parents were determined that Kathy would be raised in the community. They had to move to Denver from Fort Lupton Colorado so that Kathy could get an education - still in a segregated school which was the norm for those days but an education nonetheless. Kathy treasured her education and was an avid reader for her life. Because of her severe speech impairment Kathy was often treated as if she could not read, or even think for herself - nothing could be further from the reality.
When Kathy became an adult she felt she could no longer expect her parents to provide care for her - and in those days there was no HCBS or any sort of community support services. She reluctantly went into a nursing facility where she spent her young adulthood. In her 40’s she met Wade Blank and along with many others was freed and embarked on a journey of independent living. While this was not always easy, and sometimes quite a challenge, Kathy embraced her independence and throughout her life continued to expand her horizons. She did not have complete independence with a computerized communication system until she was 70 years old, but learned how to operate a computer speaking system during the last decade of her life - very typical of Kathy.
Kathy was the first CCDC Board President. She would do whatever was needed for the organization. When we were too broke for stamps (this was before email was the norm), Kathy would come to our East Colfax office and get all of the local mail and roll around town delivering it. Even though Kathy lived on SSI, she always donated to the organization, recognizing that important responsibility, not just as a Board member, but as a member.
Kathy loved kids - she would always be up for watching the kids of the staff, including my kids who as young adults remember her with love. Kathy has a host of nieces and nephews who have always been an important part of her life. Kathy was also a dedicated Rockies and Broncos fan.
Kathy was one of my early mentors, she taught me about Colorado culture, about what life was like for those who came before, making me appreciate the gains we have now and always heightening my determination to continue this important fight. Kathy also felt strongly about continuing and always encouraged me and CCDC even when her health made her personal participation impossible. As a final gesture typical of her commitment and generosity her family asked that donations in Kathy’s memory be made to either CCDC or St. Barnabas Episcopal Church 1280 Vine Street in Denver.
While Kathy passed away on June 18, 2013 we wanted to have this last opportunity to say Happy Birthday and THANK YOU.
Barry Sweet - June 2013
Our June Person of the Month is Barry Sweet. June is outdoor recreation month and Barry is a Park Ranger at Rocky Mountain National Park and has been for the past 26 years—before that he was a Park Ranger in Yellowstone. The word Ranger comes from the 14th century English term meaning “Keepers of the Royal Lands”. The Royal family assigned rangers who would range the land and assure no poaching, illegal diversion of water sources, logging, etc. occurred. That is still what they do to this day.
Talking to Barry you become immediately infected with his passion for nature, its place in our lives, and how nature should be accessible to everyone. It is rumored that he wears his Park Ranger hat at night as he sleeps because he is so proud of it. When asked how he became a Ranger he said that he was the kid in high school that walked across the campus picking up trash and encouraging others to do the same because he wanted a beautiful campus. After he graduated he moved from Phoenix to Flagstaff because he needed (not wanted but needed) mountains and pine trees. However, Flagstaff did not possess enough mountains or pine trees, so he moved to Colorado.
Barry was a recipient of one of our Access Improvement Awards last year for his consistent efforts to make nature accessible to our community. He contacted us about this time last year to encourage us to come visit Sprague Lake where there is accessible back country camping. (For city folk like me, he defined back-country as camping at least a half mile from your car, whereas front country camping is camping mere feet from your car). Rocky Mountain National Park developed the Sprague Lake Accessible Site years ago; it is a completely accessible campsite on a beautiful mountain lake, a half mile from the trailhead, accessible via a hardened wheelchair accessible path. The site is in the trees with accessible privy restrooms and picnic tables. People can go for the day, or camp either under the stars or in their own tent. To make it better, it is affordable, only $20 for a full three nights. People with disabilities can get FREE access to any of our National Parks by applying for a Golden Access Card.
I asked him how he got invested in access issues and outreach to our community. He said that several years ago the Chief Ranger, Mark Magneson, asked him (Barry) to make some personal invitations to the disability community because the Sprague Lake Accessible Back-country Site was under used. Barry did so –however it is clear when you talk to him that both inclusion and passion for nature is much more than a job—it is a calling and something that has become part of who he is as a person. Many of us activists understand that the lines between your job and your beliefs can and should blend together. I asked how they came to make this site accessible and he said that they realized that they had everything else accessible except back-country camping. "National Parks are for everybody" He said “Everybody means everybody” and we (Rocky Mountain National Park) want to open our arms to all of the people of America and the world who want to come.” He said several times during our conversation that “everyone means everyone”. How we wish everyone could be so clear!
I asked Barry what a Park Ranger does—with no hesitation he said that his job was to “Protect a National Treasure with my life” and also to help humans become better people by giving them time to reflect. He does this by keeping this amazing space available so that there is a way for humans to reflect in nature. Barry said when people come to the back-country they can then push the “pause button” on their busy, stressful lives. Some people realize that they are not living the way they want to live, or may be making reactionary decisions. After being renewed by nature and beauty, people are able to make improvements in their lives and thinking when they return to their regular lives. The final part of his job is to create “Dream back- country trips” for people. Barry camps himself as often as he can but he says his best camping trip in Rocky Mountain National Park was a trip to Thunder Lake - 6.8 miles in—he hiked with his then 12 year old son and they crossed the Continental Divide. He wanted his son to be able to cross the divide before he became a teen so he would have a solid place of confidence as he became a young man. It must have worked because his son graduated from college last week and is now a multi-engine commercial pilot!
In his 26 years he has seen a bear 4 times (black bears not grizzlies) and regularly encounters deer, elk and moose. He urges all of us to come and camp to experience the magic in nature. He says that the renewal one gets from spending time in nature is unobtainable anywhere else. The wilderness of the Rocky Mountain National Park is one of the most inspiring and breathtaking places anywhere to be in touch with nature. He emphasized that Rocky Mountain National Park does not simply open its arms to the disability community of Colorado but it opens its’ arms widely and warmly welcoming us. If you are interested in a camping experience he really would like to hear from you. He will answer all of your questions, address any concerns and will do whatever is in his power to make this a positive and welcoming experience. So, please—sometime during the summer take a day or two or three away from the constant fight for inclusion and renew yourself in this amazing space. You can call Barry at 970-586-1242.
Amy Smith - May 2013
CCDC is pleased to feature Amy Smith for our May person of the month. May is “Mental Health Month” and Amy has been involved in mental health in a variety of capacities for many years. She was diagnosed with mental illness as a teenager and since that time has had on and off involvement with the mental health system, both public and private. She fell into policy by accident. She had entered an art contest through ABC but then had foot surgery coupled with asthma so was on crutches and oxygen and could not get out. Someone from ABC came to her home to get her art work and they began talking. He invited Amy to the consumer advisory council. Amy never heard of any such thing and got there and was excited to see a vibrant group of other people with similar labels working on mental health policy. Not surprisingly she became the chair, then ended up on management council, then ended up with a paid position running a drop in center and it took off from there.
Today she does a lot of work on the international level, and is involved in creating a community promoting the strengths of women and girls in Yuma County, where she now lives. With social media she is able to do international work even when she only sees her colleagues once or twice a year. During this month she will head to South Africa to meet with leaders in the CSX movement. CSX stands for consumers, survivors and ex-patients—the various descriptors used by and about people who have experiences with the mental health system. She was chosen to represent North America because of her extensive study and writing on the Affordable Care Act, and the blending of physical and behavioral health care as well as the integration of behavioral health care with substance abuse treatment.
We asked her if she really believed that so many people have mental illnesses, is it really 25 or 30% of the community. She believes not. She said that she questions the premise of brain disorders; she believes that there are some true brain disorders but that it is much rarer than what is diagnosed. Amy said that she believes that what presents as emotional distress and even cognitive problems are reactions to trauma from early life. She was quick to explain that trauma means any situation that causes one to feel out of control and overwhelming and that this can mean different things for different people. Even the government agency SAMHSA (Substance Abuse and Mental Health Services Agency) believes that 90% of those diagnosed with serious mental illness have experienced adverse early childhood experiences. This could be an illness, a car accident, being caught in a storm or abuse or neglect.
This theory makes sense and explains why all mental health treatment has always been so individual, what works for one does not work for another.
This also explains why we are not sure if these problems are genetic or reactions and ways of thinking are learned. Amy believes that the mental health system does not do a good job of teaching people how to respond and think differently. She said that they focus on teaching specific skills and behaviours but if one cannot think through problems and generalize solutions they are left ill-equipped to deal with life. She gave the following example:
Patient in a mental health setting might say that she has a goal of being in a loving relationship. Patient may be advised to try a houseplant, then a pet to prove herself worthy of caring for a living thing. If the patient fails at caring for a houseplant, the patient would be taught she does not deserve a relationship. Amy says a better way of teaching would be to help the person explore what it means to be in a relationship, to understand that it can be painful, that there is sorrow and joy, and to help someone learn how to compromise, understand others and to consider what is important to that individual in a relationship.
While critical of the current system Amy is clear to say that it saved her life. She believes that what was really valuable was that there were people who cared about her and felt her early days working with the ABC council were instrumental to her –she said if she missed a meeting someone would call her and that let her know someone cared. She still believes that a vast majority of the people working in the system are good people who want to help. She is concerned that some with power to stop change are too heavily invested in the current culture that is not empowering and not always effective. She thinks the most hopeful aspect of the Colorado system is trauma informed care. This is based on robust solid science, and addressed root issues and is not punitive. She gave a personal example of how this works.
Despite all of her experience she was not welcome on the state mental health planning council. The rejection had enraged her and she was spending all of her time and energy trying to get herself admitted to this meeting. A trauma informed therapist using nontraditional methods such as watching and interpreting body language helped Amy see that it was the rejection that brought up painful childhood memories—as Amy was rejected by her family at a young age. With this help, in a nurturing, non-punitive manner, Amy could see the real issue, deal with it and realize that going to Mental Health Planning Council was not a big deal. She is now able to realize that it is only a meeting, and an ineffective meeting at that. She sought therapy to deal with her rage against this planning council despite having had several traumatic experiences with abusive and inappropriate therapists because she knew she needed the help. Her rage was making her appear mentally ill. She was becoming paranoid, had racing thoughts, and was obsessed with this entity. She knew she needed help and got it.
We asked Amy why she chose to be part of the CCDC Board—why Cross-Disability when her clear issue is mental health. Amy said that while she was involved in the mental health world as an employee she always saw the respect people had for CCDC. She believes the CSX movement can learn a lot from the disability rights movement. She also believes in solidarity and has seen herself that none of us are free if any of us are oppressed. She believes we face the same barriers and can work together for effective change.
Amy plans to continue her international work, and on a national level she is working to bring the National Association for Rights, Protection and Advocacy (www.narpa.org) conference to Denver. She believes that as a movement the CSX community needs to see each other at least once a year and believes this conference might be the perfect venue. She also wants to build a Colorado chapter of Mind Freedom International http://mindfreedom.org/ and believes that this is a place where the Cross-Disability concept will flourish.
In addition to CCDC she also serves on the board for the Heart of the Boardwalk Mental Health Clinic (www.charg.org) and on the Protection and Advocacy for Individuals with Mental Illness (PAIMI) board. http://www.thelegalcenter.org/index.php?s=10290
Her greatest pride is her adult son Ty. Through Ty she also has the experience of being a family member and says that the interventions on her family by the system were brutal. Ty is now a policymaker in his own right and runs an organization called Youth Voice. http://youth-voice.your-talk.com/ this is an eclectic, state-wide, member driven organization. Ty participated in the CCDC youth program many years ago. Amy says that not only did the apple not fall far from the tree, but she picked it up and threw it at his head! She is very proud of Ty and has no doubt he will reach his goal of having a fulfilling professional life, with a lasting relationship and freedom from the system. She knows that this is a tough road but has no doubt. Knowing Ty and the great role model he has in Amy, we have no doubt either!
Rochelle Larson - April 2013
Pictured: Rochelle Larson (center)
April is a month when we celebrate volunteers. We celebrate our wonderful CCDC volunteers and volunteerism in general. We celebrate that volunteerism is a way to gain a voice and improve your community. CCDC is highly honored to spotlight Rochelle Larson, volunteer extraordinaire, as our April person of the month.
Rochelle has been a volunteer with CCDC for longer than either of us can remember—sometime in the late mid to late 1990’s. Everyone who is anyone in the disability or human services world in Grand Junction knows Rochelle. Rochelle is one of those volunteers that any Executive Director is happy to have. Her motives are pure—it is always about the community or clients. When she makes a commitment we see results. When asked to coordinate an ADA picnic, it is not a little group at the park but a community production with a Color Guard Salute, proclamations by the Mayor and County Commissioners, involvement of dozens of community groups, games and prizes for the kids and enough food for a small army. She also recruits other volunteers and gets all of the goodies donated! Another example of “pure Rochelle” follows: She receives a call about a student with autism in need of accommodating housing. She calls her friends at Hilltop (a large Mesa County non-profit) and next thing you know is there is a coalition of advocates and service providers working on holistic autism services for the Western Slope—they call themselves Audyessy (pronounced Odyssey).
Clearly she is a sought after woman on the Western Slope. As a result, her volunteer resume is quite impressive. Her work includes a leadership position with the Lions, with a focus on vision loss caused by diabetes. She received their Humanitarian Award in 2011 causing an eye bank to receive a $500 donation. She serves her local school district in several ways: She is an educational surrogate appointed by the State Department of Education to assure a free and appropriate education to foster children; she serves on the school district Medicaid advisory committee, and works with the nurse/family partnership on early intervention. While special education and children are a passion, she also does work for seniors. She represents CCDC on the Aging and Disability Resource Center (known as the ARCH), and formerly held leadership positions with both RSVP and AARP. In case she missed anyone who is neither a child nor a senior citizen she also is the chair of the Mesa County Human Services Council and is a leader in the Mesa County DOVIA (an organization to promote volunteerism). She is a past President for four years, of the Center for Independence, which is the local Independent Living Center in Grand Junction. This is a sampling of her volunteerism!
When I asked her why she does this, she was perplexed. I think it never occurred to her NOT to volunteer. She struggled for an answer –because giving to her community is so natural to her that a reason escapes her. She said she likes to keep her mind active, and that having a physical disability the mental activity keeps her mind off of her pain, but it is clearly so much more. Having known Rochelle for more than a decade, I think Rochelle could no more stop volunteering than breathing.
She connected with CCDC when she inherited two grandchildren, both of whom had disabilities. She was at a support group, experiencing frustration with the system and was told to contact CCDC. When asked why she has stayed she said, without hesitation “I believe in the mission.” She added “I see how important it is to be able to have the power of an organization behind you to get needed services” remembering how frightening it is to have to challenge a government entity.
When asked what she sees as the next step for the disability rights movement, she said that we need to focus on increasing community acceptance and tolerance. She suggests that we reach out to employers so that they can understand about accommodations. She expressed concern about needing quality services to address the higher numbers of children and adults with autism. She believes the explosion in autism diagnoses is due to better diagnostic techniques. She said before we had such awareness of autism people were simply suffering in silence, living in a world without adequate communication.
I asked her what advise she has for newer volunteers, especially advocates. She said that building relationships in her community has been the key to her effectiveness as an advocate. She said that as volunteers we can start with some credibility based on our passion and because we are doing this work because we care, but cautioned that this will only take you so far. She said the professionals need to be able to respect volunteers and will only do that if we take the time to develop relationships with them. She cautioned that advocates need not go in guns blazing. She said that we can and should be assertive and always keep in mind that we are there for the client. She said that if we get so wrapped up in our own anger sometimes we lose credibility and effectiveness. She acknowledged that this is really, really difficult at times, but something she learned over the years to be essential. She insisted that we can be strong with integrity and hold our own ground without being mean.
Despite this incredible legacy and imprint Rochelle has left on so many organizations, her most prized accomplishment is that of a mother, grandmother and now great-grandmother. Rochelle raised three children, has four grandchildren, two grandchildren, one of whom she adopted. Both of her grandchildren had disabilities. She is a great grandmother to two adorable twin – one of each, a boy and a girl. Her granddaughter is a special source of pride and you can hear the love in her voice whenever she speaks about this relationship. From a child in special education with a “dual diagnosis” emerged an accomplished young woman, who lives and works independently, owns a home, and has earned several promotions at her job. She had lots of advice for anyone raising kids with disabilities most of it centered on trusting yourself as parent/guardian/grandparent, asking questions and demanding answers, and being involved with all of your children’s (or grandchildren’s) activities.
“Get involved” is advice that Rochelle has lived and as a result life is much better for people with disabilities on the Western Slope. Martin Luther King Jr. said that “everyone can be great because everyone can serve” Rochelle lives that greatness every day. Words cannot express the gratitude felt by CCDC for her incredible service.
Nicole Vanston and Jareth Charles
Pictured: Nicole Vanston and Jareth Charles
For March we’re featuring Nicole Vanston and Jareth Charles two artists who are active in the VSA Access Gallery of Denver Colorado.
Nicole is 23 years old and has been participating at VSA since 2010 when she started transitioning from the Denver Public Schools (DPS) STAR Program. Nicole loves painting dragons and dinosaurs in particular. Her medium is using acrylic paints as well as a unique style of stitching on canvas. Nicole enjoys the VSA program because it is helping her expand her artistic expression and abilities and gets her closer to fulfilling her personal goal of being an artist full time. She said that her artistic expression was inspired by her grandmother.
Jareth Charles is 17 years old and has been participating in VSA since 2012. He is also transitioning into VSA from the DPS STAR Program. He enjoys drawing in depth, original characters that he hopes to some day develop into comics or animated movies. He uses ink pens to draw his characters and is starting to paint some as well. When asked what he enjoys most about VSA Jareth stated that its about the people and the community feel. He started creating when he was 5 years old and his artistic process evolved to more intricate figures displaying great detail.
VSA is an international non-profit organization founded in 1974 by Jean Kennedy Smith. Nearly 5 million people participate in VSA programs worldwide each year. VSA Colorado was established in 1978 and serves nearly 10,000 participants with disabilities statewide annually. The amazing non-profit VSA Colorado Access Gallery reveals to the general public the abilities and capabilities of people with disabilities by providing the latter with creative and educational opportunities as well as space to showcase their works.
Executive Director Damon McLeese said that Access Gallery gives artists with disabilities a place to go when they start their transition from high school to develop their job skills and readiness for the real world. He also stated that the gallery is working on creating more corporate commissions to help the artists have more sustainable lives doing what they love to do most.
Lauren Blakely and Mitch McKinney
Lauren Blakely and Mitch McKinney - February 2013
Pictured: Allison Blakely Rampley behind Lauren Blakely and Chris Rampley behind Mitch McKinney
For February, the month of Valentines Day, we are happy to introduce to you Lauren Blakely and Mitch McKinney. I was fortunate enough to be at a beautiful celebration in October of 2010 where they made a promise of loyalty in front of their community of families and friends. I have known Lauren for many years as she was an intern at CCDC when she was ending her high school days. She worked on assistive technology education among other projects. I have seen Mitch around the disability community for many years, as one who is active serving on a number of community boards.
They met after being introduced by Barry Rosenberg, the owner of PASCO and a former member of the CCDC Board of Directors. They “dated” online for awhile and then once they finally met in person it was love at first sight for both of them. Lauren describes feeling butterflies in her stomach and Mitch says that he knew he had met the love of his life. By the end of their first meeting they knew they had something special.
Many people in Colorado are young and in love so what is so special about Lauren and Mitch? They are both people with very significant disabilities, and considered “non-verbal” because they have Cerebral Palsy to such an extent that their speech is very difficult for others to understand. Both of them use adaptive equipment to speak to outsiders. I remember watching Lauren use her machine,, and remember thinking it was a good thing she was young because only someone with a young brain could remember all that one needed to remember to use a communication device. (People of my generation used the old fashioned letter boards). I asked them if they had expected to find true love given the nature of their disabilities. Lauren says by age 15 she thought she would not find any kind of relationship so told people that she did not have time for boys due to her studies. Mitch said that he always wanted to find love but though it unlikely, however held out some hope. They are also unique in that they came from supportive families, when they fell in love and wanted to commit no one said it was unrealistic or discouraged them but rather were excited to see their relationship flourish. Mitch and Lauren say that their families know they can do anything they want despite their disabilities. Mitch says his family knew at his 39th birthday party that love was in the air and that his father told him that when Lauren came in the room his eyes lit up. I recall seeing that exact expression, one of complete joy, on his face at their ceremony during the first dance.
With increasing frequency it seems that people with disabilities choose to be with each other rather than being with someone without a disability. Lauren says she could not imagine being with a non disabled person, but qualified that with saying that she did not imagine meeting someone as wonderful at Mitch either. Mitch said he could see himself with an able bodied mate but doubts that they would share the same humor, something he finds critically important to the relationship. As noted, both Mitch and Lauren have significant communication disabilities, when they are alone they rarely use their communication devices, rather they speak with their voices and are able to understand each other most of the time. Mitch says Lauren understands him more than he can understand her but Lauren says they both do well most of the time and have the technology if necessary.
Both Mitch and Lauren require attendant care to assist them with activities of daily living but they have attendants that respect them and their privacy. They have about five hours a day when no one is around and they value this time. Their attendants do respect their privacy as well.
The rest of their relationship is pretty typical of young couples. They like to go to movies, out to eat, swimming, camping, and spending time with family and friends. When they have differences of opinion they work through it because the realize that together they are stronger and respect each others opinions. They see their future including a lot of travel, and possibly working together at least on a project or two. They also enjoy their friends and family and see including them as an important part of their future.
When asked if there was anything they wanted to share with the CCDC membership the message was simple. “Don’t be afraid to dream big because it can work.”
(Pictured here with Mitch and Lauren is Lauren’s sister and brother in law who were married New Year’s Eve of 2011.)
Mark Ferrandino - January 2013
January is the month where we celebrate Independent Living. Independent Living is about fully participating in all aspects of the community. Our January Person of the Month embodies the vision of the Independent Living Movement. He is a person with a disability who at one time in his life was a kid in a self contained classroom, separated from his non-disabled siblings, subject to bullying and low self-esteem. Early this month he will be sworn in as Colorado’s next Speaker of the House.
Talking to Mark Ferrandino is a breath of fresh air, especially for anyone who is growing weary of politicians. Representative Ferrandino is down to earth and has a goal while Speaker, to try to build back the trust of the people and gain back respect for the institutions that govern us. He is aware that people are losing respect for government and fears that if that respect is lost completely that we lose democracy.
I asked what exactly a Speaker of the House does? Rep. Ferrandino explained that he is the leader of the house; he must manage the operations, figure out who serves on what committees, decide to which committees bills go, and much more. He was quick to say that being a leader did not mean being a dictator. When asked if he always wanted to be in politics, the answer was an emphatic YES. He recalls talking politics with his grandfather. Between that and his father being a history teacher he was drawn to policy issues early in life. He was always drawn to elected office but never knew that he would actually succeed.
A good deal of our conversation revolved around the need for people with disabilities and those who support us, including our families, to let us try, to support us in reaching for our dreams and to make sure that we do not allow low expectations (or worse yet no expectations) to stop us. He said, and CCDC agrees, that low expectations are always a bad thing. He was told that winning elected office was unrealistic. His parents were wary as they did not want him to get hurt—he understands that parents are naturally protective but his advice to parents of special education students is “let your kid follow his or her dream. You can share realities and know that your child will not always achieve the desired outcome but that does not mean one should not try”. He said “never in my wildest dreams would I have thought I would be about to be sworn in as Speaker of the House.” His advice to students is the same-“do not let people tell you that you cannot do it”. He is planning to spend time as speaker during the interim talking to young people with disabilities, something that CCDC strongly supports. Too few students with disabilities have solid role models. Mark Ferrandino is about the best role model our kids can have.
I asked him about how he developed his identity as a person with a disability—if there was ever a time when he hid his disability. He explained that his elementary school years were spent in a self contained classroom in a school separate from where his twin sister was educated. In other words, there was no hiding his disability. However, by high school he was mainstreamed and like most teens did not want to be different, so tried a little to hide who he was. However that did not last long and as he became more accomplished he realized that being a person with a disability is part of who he is. Rep Ferrandino says that while life may have been easier had he been born “like everyone else”, he would not be the person he is—nor would have all of the strengths that he currently possesses had he not lived with a disability. He acknowledged that most of us go through a phase where we fight our identity, often we are mad at the world, but then we realize how our disability is not a negative and it becomes incorporated into our self concept. Rep Ferrandino says that “disability is not the only thing we are but part of who we are.”
We discussed how so many of our people live in poverty and I asked him how he escaped the poverty and unemployment that plagues so many of us. He credits his success to a combination of strong family support and a great education that included strong early intervention and additional supports. While he was in a self contained class he also had extensive therapies in elementary school. He is passionate about giving all of our students the supports needed to enable success. He said that even with adult education or re-training programs we need to consider that some students with disabilities may require some additional supports and that it benefits us as a society to provide these supports. He believes that the need to increase employability skills is a national need. He is passionate about education. Between having parents who were public school teachers and the effect of education on his life that passion is easy to understand. His other main goal as Speaker (in addition to restoring trust) is to steer the state towards prosperity and assure that our policies give everyone the opportunity to achieve. He believes that we accomplish this through investment in job incentives, training and education.
Other than his parents, his heroes include Harvey Milk, an openly gay politician and FDR. He talked about how he appreciated how the memorial in DC was dealt with because it both respected how FDR himself wanted to be seen but did not hide the fact that he was a President with a disability. Representative Ferrandino did not see FDR as hiding who he was, but in doing what was necessary at the time to be elected—and he cautions us to think about what would have happened to our country had FDR not been elected.
As Speaker Mark Ferrandino will be an ally to all citizens because of his strong belief in Democracy and our processes. He says that Democracy is messy, you never get everything you want, and it does not work quickly but it does work and we need to make sure people can trust it. He said part of the beauty of Democracy is that it allows you to scream and yell at your government and demand change, and then you can be part of affecting that change. He believes strongly in citizen involvement and says that the disability community has demonstrated that when we involve people who are getting services in developing policies around those services we get a better outcome. He feels the same about other policy areas, such as involving teachers in educational policy to create a better education system. The education system just got a little more personal. His latest adventure in is the fostering of a beautiful little girl. Rep Ferrandino and his partner are hoping to adopt her and watching the Speaker with his foster child it is clear that fatherhood suits him wonderfully.
When Joe Beaver was President of the CCDC Board of Directors there was not a meeting when he did not say that if we ever wanted true equality, more people with disabilities had to run for office. He is right, and we are incredibly fortunate to have a person with a disability as our incoming Speaker of the House of Representatives. He will be sworn in when the Legislature Opens for the 2013 Session on January 9, 2013.
Sam Murillo - October 2012
Sam Murillo a Family Navigator with Family Voices of Colorado is November’s Person of the Month. November is “Family Caregiver” Month and Sam is representing an important and often overlooked segment of the disability community—siblings of people with disabilities.
Sam, 32 is a native of Denver, is one of four boys. He is married to Emily Murillo, a social science researcher. Two of his three brothers have disabilities. His oldest brother Robert was seven years older than Sam and had a lifelong seizure disorder. Robert had Huntington’s Disease which became very disabling at age 20. This genetic disorder is rare for a child and presents like ALS. Robert died from this disease in 2007. Sam has two younger brothers as well, one of whom has Schizophrenia. Like many people with childhood onset schizophrenia, he had severe learning disabilities that were never diagnosed or treated. Because of this, Sam says his younger brother struggled in school and was treated as a behavior problem. He ended up self medicating and developing a drug addiction—a common story for people with serious mental illness. His younger brother was not diagnosed until he was 23, after which he was able to stabilize and get treatment (he has only been clean for 17 mos). The youngest brother of the group does not have a disability.
Sam is a Family Navigator at Family Voices of Colorado (www.familyvoicesco.org) and says this job is an alignment of the stars -an ideal job for him because he gets to use his skills and passion. He spends a lot of time at Children’s Hospital in the neurology and rehab department. He grew up seeing what seizures do and also seeing the failures of systems to meet the needs of families. His father was adamant about the need for Sam to get an education. Sam earned his Master’s Degree in Social Work from the University of Denver after earning a Bachelor’s Degree from Northwestern University of Notre Dame.
Living with disability clearly shaped his life. Sam clearly comes from a very strong family and if there is a “right” way to raise children with and without disabilities together Sam’s parents did so. Sam credits his upbringing to making him a well rounded person but also sees his entire family as more balanced and healthy due to their experience with disability. Sam says that his life with his disabled brothers caused him to be able to think about social justice and systemic issues from a very young age. He recalls in fourth grade musing over questions such as why he was one of very few students of color at his private school or wondering what caused bullying. Advocacy was clearly in his blood from a very young age—he recalls instinctively reacting to bullies even when doing so caused him to take a beating. Sam grew up believing what we spend lots of time trying to convince the community--disability is a normal part of the human condition.
When asked to describe his older brother, he used the word superman—the adoration of a younger brother still resonating in his voice. I asked Sam if his decline and increase in disability diminished the superman like qualities. Sam replied that it was the opposite. Sam described his brother as “the most tender human being” he ever met and said that even when he lost his ability to talk that his attitude lit up a room. While it was very difficult to watch is beloved older brother lose abilities such as the ability to work, to walk, to work out, and to watch the emotional struggles that all of us with acquired disabilities go through, Sam said that Robert handled his disability with grace and dignity. Sam describes his family atmosphere as one with very high expectations fortified by an environment filled with love and laughter. He tells a story that during transfers (that took two people because Medicaid was not approving Hoyer lifts in those days) Robert would flip Sam off while their mother had her back turned. Sam would be a typical kid and tell his mother but when their mother would turn around Robert would have his hand down looking angelic. However as his disability progressed he was not able to move his hand as quickly so got “caught” but they continued the game—and always laughed about it.
It was not all fun and games; when Robert learned at age 13 that he had Huntington’s and would deteriorate then die young he attempted suicide –and Sam found him then turned to drugs before coming to peace with himself as a man with a disability. Sam said for years he would sneak and follow Robert around and go to places where he knew Robert would go, such as the neighborhood rec center and would tell people about Robert’s disabilities, asking them to keep an eye out for him and explain what a seizure might look like, and what they should do. He did this to preserve the dignity and independence that was so important to his older brother. Sam knew his brother did not want their parents on his back but also knew instinctively that some assistance was really necessary.
I asked Sam if it was a burden to provide so much care—many in our mutual field of Social Work would say that having a teen provide physical care or even other support for their sibling is not good—they use the word “parentification” and that means that they think it puts children in the role of parents—and that doing so is very bad for children. Sam disagrees that this is bad and says that they way his parents handled it was not damaging at all, but rather very empowering. Not only was Sam part of the care (his mother was tiny and his father working so often Sam was the only one strong enough to effectuate a transfer) but Sam also would attend IEP meetings for his brothers. As a kid going to the same schoolsSam had a better idea than any parent could about the day to day trials and tribulations experienced by his siblings. Sam stresses that it is important that taking on this role should be voluntary, encouraged through empowerment and strength development and should never be forced on a child or teen and certainly should not be due to refusal of state systems to provide appropriate support. Sam clearly felt empowered to be part of the care.
Because of the systemic barriers, the need to have to fight for adequate medical care, appropriate services and an education, parents of disabled children are often overwhelmed, both emotionally and financially. This leaves the non-disabled often taking a back seat. Sam acknowledges that while he was well loved and knew his family cared, that his needs were not ‘front and center’. Sam says it was not until he was 30 (he is 32 now) that his parents could take the time to ask him about his day—before that they were too consumed with the needs of both brothers. He contends that he did not need as much attention. He was a good student, active in sports, and engaged in other activities such as school clubs. His parents were not always able to attend his events, but always made to sure to support his academic pursuits. His father as an immigrant was sharply focused on education and was determined that Sam get a top notch education. When the time came to go to college there were two choices—one local and one out of state but to a better school. Sam did not want to leave, he worried his brother would die while he was gone and that he would lose his place in the family system. Not only did his father encourage him, but his brother—his personal superman—encouraged Sam to go away to college. Sam says that while he had responsibilities at home he was always allowed and encouraged to have his own life. Robert promised Sam he would hang on while Sam was in college and kept his promise. During the years Sam was away his brother lost his ability to speak and it haunts Sam to this day that he cannot remember his brother’s voice. Sam lost his brother two days before starting graduate school.
While Sam has fond memories of his brother he did discuss one MAJOR flaw—his brother was a Raiders fan, somethingSam as a Denverite found baffling.
I asked Sam what advice he has for parents who are raising today’s siblings. Sam stressed that the strengths of each family members should be used and nourished, that siblings should be part of the solution but also allowed to have a life of their own. He emphasized that high expectations for children with disabilities is super important. Sam was able to develop his role as a supporter, as an ally and an advocate from a young age because his parents played to his natural strengths and allowed him to participate in the care for his older brother. Sam describes this as a very empowering experience. Sam says parents must communicate openly about what the disability will look like, what it is like now and what may change in the future. Children should know how important their impact on the family can be—for Sam that value helped build his self esteem and create the man he is today. He says expectations must be openly communicated and each child must be allowed to have a life apart from the expectations around the disability of their sibling, but also be empowered to play a role of care.
I asked Sam what the disability community could do to assure siblings that they are welcomed. I asked him about the lack of siblings in the community—there are many parents but few siblings. Sam said that we need to openly let them know that they are welcome. He recalled that when he started his job at Family Voices he was worried that he would not be accepted because he was neither a parent nor a person with a disability. He hopes that the community sees the siblings for the expertise that they do have.
I asked Sam what he thought “family centered services” meant? He said this is not a new concept for us in the disability world, but is only now coming to light as a way to provide services. He said it means a holistic approach that merges medical needs with a social model. He says it is about helping the family thrive and should not be about mere survival. He said that professionals need to always remember that the only reason there are services, policies and systems is because of the individuals and families. This knowledge should always be where all policies, decisions and discussions start and end.
Sam has become a member of CCDC and attended our advocacy training. It has been a pleasure to work with Sam on a variety of health policy issues. While soft spoken, professional and exceedingly polite he is a fierce advocate in his own right, developing his own style. Sam is a valued part of the team of us who do health policy work on disability issues and is frequently part of important committees involving Medicaid issues. Sam is one of the people making up the next generation of movers and shakers in the disability community. CCDC is honored to work with Sam and look forward to continuing our relationship with this extraordinary man.
Matthew Keenan - September 2012
Matthew Keenan is the September Person of the Month. Our theme for September is “the pursuit of happiness” which is one of our constitutional guarantees as citizens of this country along with the right to life and liberty.
Matthew had to fight harder than most for both his liberty and his right to pursue his own happiness. He had to take on a system that is often seen as untouchable. He did so and won and is now, at age 47, alive, free and pursuing happiness.
Matthew was a manager at Qwest Communications, raising his son and doing well. He had no idea about our world of disability. He developed pancreatitis and went in for surgery, a medical error caused him to slip into a coma and when he woke up two and a half months later his life had changed forever. He has traumatic brain injury that affects several aspects of his life. Today he uses a wheelchair for mobility and adaptive equipment for other ADL’s and has some mild memory impairment and fatigue. However, when he was first out of the coma he was very severely disabled and was truly unable to manage his affairs. Because his disability was caused by a clear error it was clear from the beginning that there was going to be a sizeable financial settlement. So not only did he require a guardian to manage his medical care and daily decisions but a conservator to manage the funds. Initially his family assisted him, his mother was his guardian, his father figured out some investments and acted as a conservator.
He got excellent rehabilitation and got better. He gained capacity physically and mentally in leaps and bounds. As he recovered he wanted more control over his life. His family, having almost lost him and still reeling from that emotional upheaval, was reluctant to let go of control. It was his C.N.A. (certified nurse aide) who was providing daily care who told him that he really did not need a guardian. She told him that she worked with many clients who were much more disabled than Matthew who had full rights. That got Matthew thinking and exploring and seeking disability rights information. He found the Hangout Resource Center where he met counselor Scott La Point. Through Scott he was eventually referred to the Colorado Cross-Disability Coalition.
Matthew credits CCDC for not only giving him accurate information on what the guardianship standard is—but also with giving him that last bit of confidence and support needed to make the leap to secure his own guardianship. He decided to seek restoration, the legal term for getting ones rights back and hired an attorney. This caused a huge rift within his family. Rather than sit everyone down and explain guardianship and explain how people can recover from brain damage the attorneys at the time only increased the friction with his family, causing him to become completely estranged from his family. He has since reconciled with his mother, but did not reconcile with his father before his death. There was no need for this family feud and Matthew now sees this as part of the game—to continue to increase the number of lawyers and professionals involved.
Because his mother objected to elimination of the guardianship, Matthew was advised by his attorney to hire a professional guardian as a “bridge”. He would hire a professional for six months or so his mother could see that he is capable of being responsible and independent but with that safety net in place. The idea was that after the six month mark the guardian would simply resign and assure the court that Matthew no longer met the legal standard for guardianship. At the time Matthew had done well with investments but did agree to a conservator to assist with managing his relatively large sum of money. He was capable of managing day to day affairs. In fact, during the time period involved he maintained his investments due to the good decisions he made, while many Americans lost all of their wealth. The guardian began exerting excessive control over him, and actually got in the way of getting things done. For example he needed some repairs and parts for his wheelchair. Some of this needed to be done through Medicaid but other items were “wants” rather than needs therefore should have been purchased out of his trust fund. Rather than doing her job, the guardian began to fight Matthew on every request and then charged him for her time in the fight. She got herself an attorney. It got to the point where she had an attorney, the parents had an attorney, the conservator, Colorado Bank and Trust had a team of attorneys and all of them were billing Matthew’s trust and all for the purpose of fighting Matthew. Matthew then hired attorney Skip Morgan, who took the whole case to court. A judge easily saw what CCDC did, that Matthew did NOT need a guardian. At the hearing Matthew agreed to a conservator as long as it was NOT Colorado State Bank and Trust. The judge also granted that request and ordered the bank to turn over an accounting of their fees and expenditures.
The bank continued to refuse to turn anything over and what they did turn over revealed serious errors. The bank continued to amass fees and forced Matthew into more legal battles. Attorney Skip Morgan http://www.skipmorganlaw.com was honored by CCDC at our Community Awards Ceremony in 2008. After years of litigation not only were the fees the bank could take significantly reduced but this case drew enough public attention and outrage http://www.denverpost.com/news/ci_16175943 that the law was changed. While the changes did not go as far as we would have liked, there is no longer an assumption that fees charged by conservators and guardians are legal. Moreover, trustees MUST provide accounting to those they are supposed to help within 30 days of the request. (SB 11-083) Matthew took a stressful misfortune and worked to make sure that those who follow did not suffer the same exploitation by lawyers, guardians and professional fiduciaries in the future.
When asked what kept him going during these years of battle he said it was his faith. He says he always knew it would work out eventually—despite being abused by one facet of our legal system he retained faith that somehow, sometime, the system would work for him and realize that with the notable exception of Skip Morgan, his attorney, those charged with protecting him had turned into perpetrators against him. He maintains a firm belief that while there are many injustices in the world, that God is just and justice does prevail at some point.
We asked Matthew what advice he had for someone who may have a guardian who does not listen or who the person thinks is not necessary? He said it is important to find someone to give the facts—and to make sure that whoever gives you the facts can back them up. People should be able to show you what the law says not just tell you. He said that was what was so helpful about what he got from CCDC. He recalled that not only did we explain his rights but we provided written backup via email, his preferred communication method. When asked what advise he had for guardians he was clear—he said guardians should never forget to consider the wishes of the client. While that may sound obvious, too often this does happen and leads to tragic and expensive ordeals.
Due to his perseverance and a good lawyer, Matthew is now able to enjoy his life, revel in his liberty and pursue happiness. Matthew is recently married and is pictured here with his new bride, Kara. He has one child. His future plans include more education. He is studying for the GRE and will see where this leads him. Wherever that it we are sure he will continue to do great things. CCDC appreciates Matthew and people like him who refuse to be victims and who use their experience to support the hopes and dreams of others. We are proud to call Matthew a CCDC member.
Darla Stuart and Linda Skaflen
Darla Stuart and Linda Skaflen - August 2012
As everyone with kids gets ready for 'back to school" we are going to make education for children with disabilities our social media theme for this month. CCDC believes that ALL children means ALL children --no exceptions. CCDC has been very happy to have been working with two outstanding advocates--both of whom are Executive Directors of Arc chapters--and both of whom have notable experience with Educational Advocacy as our August people of the month. We present to you Linda Skaflen from Arc of Adams and Darla Stuart from Arc of Aurora. Educational Advocacy in the disability world refers to a plethora of activities that should result in at least all students receiving a free and appropriate public education and hopefully will result in our students acquiring the skills they need to succeed as adults.
All Arc chapters in Colorado provide independent advocacy to both children and adults. Independent advocacy has no financial or contractual relationship with organizations providing direct services to people with disabilities which are generally funded through public dollars. The Arcs were developed as a grassroots organization across the United States in the 1950’s. The majority of Arcs across the country actually provide publically funded services to people with intellectual and developmental disabilities. Colorado’s ability to provide independent advocacy is an exceptional opportunity. All local Arc chapters have the ability to customize supports and services to their local community.
Both Linda and Darla have extensive, impressive backgrounds boasting decades of experience advocating for and with people with disabilities. Linda has a degree in Social Work has been directing Arc of Adams since 1985; Darla has a degree in Urban Planning and has been at Arc of Aurora since 1994. Both had an early introductions to inclusion issues. Darla's mother has a disability and she grew up with a disabled parent before we had civil rights--something that affected her outlook on life and advocacy. Linda recalls being "blessed" to have lived in a unique school district that did integrate disabled students. She recalls how relationships with students with disabilities as peers formed as a sixth grader helped forge a rewarding and successful career. ( If that is not an advertisement for the benefit of integration to non-disabled students I don't know what is!)
Darla defines Educational Advocacy as assisting an individual with disability and/or their family in the least restrictive manner to help them obtain an needed or desire service provided the educational community. Linda adds that Educational Advocacy on any level should be done in the most empowering style for the individual, and as appropriate, the student’s family. The Educational Advocate should support the student or the family to act on their own behalf.
When asked why Educational Advocacy is important Linda reflects that school is meant to prepare us for our futures. "Our experience in our social groups and our learning groups give us skills to move through our entire life. It helps us learn not only about ourselves but about how we manage different opinions and different people and how we work together. If we are in an environment where everyone is “alike”, we don’t learn how to really manage life as an adult." She said that Educational Advocacy is important because it is one way to get to this goal. It reminds and motivates the public school system to do what they are supposed to do for all students. Darla adds that " This isn't just a law, it is without a doubt one of the most important rights we can guarantee a student with disabilities. Disability is a part of the human condition, it is neither something to be isolated from or feared." Darla thinks that every student with disabilities should be encouraged to find his/her "voice" regardless of whether that is through a state of the art communication device or through encouragement of educators in helping the student with disability in speaking up and out.
If she could wave a magic wand over the education system Linda would assure that all educators would welcome any child into the public school environment without caveats. Educators would see each child as an individual with unique qualities and to know that they belong in my classroom, in my building, in my district and in my neighborhood. The true change would be when daily thoughts of teachers, principals, school board members and anyone else involved in education change from “It is my legal obligation to support a student” to “It is my very own ethics that leads to my responsibility to educate all children, in a way that each child can learn.”
When asked about a great moment in their careers providing educational advocacy Linda wisely opines that great moments happen when the outcome accomplishes what a single child wants and needs. It can be small or big in other’s viewpoints but if it works for that child it is a great moment. Darla gives an example describing a situation where she provided educational advocacy to a child who had been placed in a general education setting with NO supports. He was isolated and failing. Through advocacy support was provided and within two years there was a complete turnaround, educationally and socially. The student graduated and started a business and still keeps her up to date about his life, which is a life full of choices and opportunity.
In addition to their amazing educational advocacy they do much more in the broader arena of disability rights work--for example, Darla is the lead advocate in Colorado for people with disabilities who are victims of crime. Earlier this year, she led a broad coalition to pass HB 12-1085 which created a hearsay exemption allowing people with communication related disabilities to be able to have a friend or family member testify in court and have what they heard from the victim be considered as evidence. Darla also represents CCDC and the Arc of Aurora on a task force related to reporting of abuse for at risk adults. Darla has been a leader in trying to establish a process to identify abusive caregivers and keep them out of the system.
Linda has become an active member of the Consumer Directed Attendant Support Services (CDASS) advocacy community. She is a member of the leadership team of advocates that works on these issues and is part of the State CDASS advisory committee (now known as the Participated Directed Programs Policy Collaborative (PDPPC) and serves on the transparency subcommittee. She has been a great addition to this group and is passionate about expanding CDASS to all waiver programs, particularly the waivers that serve people with developmental disabilities. When asked why she is dedicating so much time to this she said " All people have a right to self-determination and I believe we as individuals in this society have an inherent responsibility to do on to others as we would like to have done for ourselves. The supports provided through CDASS are very personal indeed and if you receive those supports you should absolutely have control over who provides them. It is why I feel so strongly that CDASS should be available in every waiver." She correctly points out that Colorado law does not say that CDASS is available only if you ask-- it says it is to be an option offered in every waiver.
Both Darla and Linda spoke about the influence of their families: Darla's mother was in a serious car accident that resulted in both mobility challenges and a closed head injury. The world was a very different place in the 60's including a real lack of recognition that people with disabilities were parents, employees, or actual contributing members of society. Linda talks about her teenage son and says his presence always reminds me life is a journey not an outcome.
Linda and Darla are both model incredible models and examples of what we would like to see in all professional advocates. CCDC is very grateful that both of these women are part of our advocacy network and our members benefit from their wisdom and strong advocacy.
Amy Robertson and Tim Fox
Amy Robertson and Tim Fox - July 2012
Amy Robertson and Tim Fox are the people of the month for July 2012. Because the American’s with Disabilities Act(ADA) was signed into law July 26, 1990 we always celebrate the birth of the ADA and CCDC in July. No one more embodies what the ADA is all about than these two individuals. Amy and Tim are attorneys, partners in law and life and own the Law Firm of Fox and Robertson. (www.foxrob.com) If you spend any time on the CCDC Legal Program Website you will see their names everywhere as we have worked closely with this amazing law firm, and the people who run it, since before the inception of our legal program.
Amy was destined to become a civil rights lawyer; her father was a strong active civil rights lawyer and proponent of racial justice he helped implement and enforce the 1964 civil rights act. By age 13 Amy was already arguing like a lawyer. Tim did not set out to be a lawyer nor did he particularly determine that he would work in civil rights. When he was a junior in college he became a quadriplegic. As a business major, he had already been accepted to do an internship at Gates Rubber but after acquiring a disability, his internship vanished. Tim began researching fields that he felt would be open to accepting someone with a significant disability—and found the legal community to be more welcoming than the business community.
Both went to top notch law schools, reflective of their incredible intellect. Tim graduated from Stanford and Amy from Yale and they met in Washington DC where they worked at the same firm. They were thrown together on a complex and long case and became friends. Both now admit that they though the other was “cute” but initially were hesitant to date a colleague from the same firm –but that hesitation did not last and the rest is history. They began doing some work on disability rights as part of their firms pro bono work and both found it interesting. They came to Denver for a vacation (Tim’s family is here and his father is the well known parent advocate Denver Fox) and decided to move here. Initially they both got jobs with corporate firms but they quickly got involved in doing pro bono. Amy recounts a story that she considers a memorable moment in her career. They had not even moved yet but she was here searching for housing. She was driving and heard an interview on the radio with someone from CCDC. She felt immediately connected to the organization and decided then and there that they could continue their pro bono and disability rights work by connecting with this organization.
In true CCDC style, once we learned about these amazing attorneys we pounced on them and eagerly accepted all that they had to offer. They began doing pro bono work with us and initially we were going to run a pro bono referral program, which was a disaster. We learned from that experience that if disability rights law was to be enforced we would need to take on the time honored civil rights role of "private attorneys general" and enforce the ADA and other laws. In 1997, CCDC convinced a young attorney graduating from law school (Kevin Williams) to come to CCDC to start a legal program. Around the same time, Amy and Tim left their firms to start a civil rights practice. CCDC was their first client.
When asked what they like about practicing law they both talk about the creativity and ability to use the law to solve real problems that affect the daily lives of people. What they could do without, are the few defense attorneys who do not care about what is right and just want to play damaging games. They are quick to point out that most defense attorneys are professional and ethical people but as always the few that spoil the bunch create a lot of tedium for everyone involved in a case.
When asked how they think the ADA has changed life for people with disabilities they are hard pressed to come up with just one thing as life is so different for people with disabilities. Tim mentioned travel—before the ADA it would be a full day trying to find an accessible hotel, and if you needed ground transportation that would be an even bigger hassle. Today, one need only go on Expedia or other travel sites to find a hotel and accessible transportation can usually be located with ease. The biggest change however is that now we have something we can do about discrimination--a disappearing internship for today's college student may not happen today but if it did there would be a legal remedy. Amy and Tim are part of that remedy.
Outside of the law their hobbies include their dogs, sports, poker for Tim and photography for Amy. Amy has also been known to blog –and her work is a great read! http://thoughtsnax.com/author/amyfarr
Amy and Tim are among the top disability rights attorneys in the country and have worked nationally but especially in Colorado to make the ADA reality. CCDC is proud of our 15 year relationship with Amy and Tim and remains a proud client of the Law Firm of Fox and Robertson.
June 2012 - Anne-Marie Mokritsky-Martin Person of the Month
June is Effective Communication Month! Our person of the month is one who provided significant amounts of education about effective communication and it’s multiple uses to CCDC Anne-Marie Mokritsky-Martin our Lead Housing Advocate.
When we met Anne Marie in 2004 she shared with us ways to accommodate people with Traumatic Brain Injury. She gave us ideas that we have now incorporated into our training that we provide to professionals. Ideas such as providing email summaries of conversations for those with memory impairments or auditory processing deficiencies (and likewise providing verbal summaries of written information for people with visual processing deficits) have revolutionized the way we think about effective communication. Not only has it expanded our view of true cross-disability inclusion (meaning that effective communication must be for everyone not only those who are Deaf or blind) but even beyond brain injury. Many of the techniques that she told us would work for people with brain injury we learned would work with many disability types including people with some types of mental illness and developmental/intellectual disabilities.
CCDC provided advocacy services to Anne Marie, but got back way more than we put in as Anne Marie has become our lead housing advocate. She is the thorn in the side of non compliant housing authorities and the equalizer for people with disabilities being abused by housing providers whose grasp of civil rights is weak. In 2010 she won the Jerry Urban Memorial David & Goliath award for her willigness to fight against the big guys and win. This award was named for Jerry Urban, who was a CCDC member known for taking on impossible adversaries and winning the old fashioned way—because he was right. She is also known for filing the occasional (ok, actually frequent) Colorado Open Records Act or Federal Freedom of Information Act requests.
Before she suffered a traumatic brain injury she was an intellectual property paralegal in Texas and learned excellent research and writing skills of the legal profession and has taken that knowledge to help people with disabilities---of course without engaging in the unauthorized practice of law!
I have heard from many of her clients and their works echo these sentiments written by one client “Anne Marie inspires people and shines in a world where too many people seem to not care or feel powerless to do anything to help." "She showed me how much knowledge of the rules and discovering information can help yourself as well as others.” Another client said “When Anne Marie got involved with my case was the first time I felt supported and like I had the right to live with dignity.”
Despite all of her accomplishments professionally, the one she is most proud of is how she has raised her son Julian. She has a lot to be proud of as Julian is a brilliant, wise, artistic, and resourceful young man with a great sense of humor. He is currently a student at the University of Colorado in Boulder. Raising him has always been her number one priority.
In addition to being a fierce advocate for social justice, she is also an artist and loves organic gardening, culinary arts, hiking, the environment, and is an animal rights activist; with a small menagerie of mostly rescued animals at her side. (Yes she lives in the Republic of Boulder).
Anne Marie’s ability to explain effective communication, and more importantly to explain what is like when someone does not receive these usually simple accommodations is an incredible gift to CCDC. She is a terrific teacher—her teaching extends far beyond effective communication. She has recently developed an advanced advocacy training curriculum for housing advocacy. The reviews have been spectacular. CCDC is lucky to have a dedicated and knowledgeable person like Anne Marie as one of our leaders. We wanted to honor her as someone who has dramatically improved our understanding and application of effective communication in our cross-disability spirit.
May 2012 - Rolf Kotar Person of the Month
Rolf Kotar is our person of the month for May 2012. May is Mental Health month and CCDC wanted to profile someone who has contributed personally and professionally to the area of social justice for people with mental illness. Rolf is our Mental Health Public Policy Liaison. Rolf also lives with a serious mental illness.
Rolf has been with CCDC since July 01, 1997. He originally came to CCDC because he wanted to write grant proposals. He initially tried without success to get hired by mental health agencies and was put off by every agency. He found out about CCDC approached the former Executive Director Jean Parker. She asked if he was dependable and asked him to prove it by writing for our newsletter. When CCDC printed what he wrote in our newsletter he continued to seek a job as a grant writer. He was offered a volunteer position and told (like others who eventually become paid employees at CCDC) that he needed to show us what he could do first. Within three months he had his first grant funded and it was our first time being accepted by the Denver Foundation. That successful grant was followed by several more and over the years he obtained thousands of dollars for CCDC. After more than five years he was a bit burnt out on writing grants but CCDC began experiencing an increase in mental health advocacy calls and a need to have several key policy meetings in the mental health arena covered. In keeping with our motto "nothing about us without us" CCDC needed to make sure that someone who lived with a mental illness and who would be connected to others with mental illness attended these meetings on our behalf. The timing was right so Rolf became our Mental Health Policy Liaison and has served CCDC well in that role ever since.
Rolf first experienced mental illness as a college student doing a work study in a job in a Georgia Hospital. His goal was to become a counselor but he was also planning to become a registered nurse for job security. He started becoming irrational and had some scary things happen with his thinking. It got worse and worse and finally he had a full blown psychotic episode in 1980 and had to come home. He found a great social worker who worked with his whole family. He got treatment and four years later returned to college (Antioch) and graduated.
Rolf introduces himself at meetings as the Mental Health Policy Liaison for CCDC not as a person with a mental illness because of that stigma by professionals. In his private life he is very open. Being mentally ill is part of who he is and his self concept. Rolf said he has found all too often that the stigma is the worst among those who should know better, mental health professionals. CCDC hears this from many of our members. Rolf recalled an experience when he was trying to get hired as a grant writer by a mental health center. The person in charge of hiring asked Rolf how many years he has been in treatment ,and when Rolf said 26 years the person just sighed and walked away. Rolf regularly shares about other professionals who are respectful and competent but wishes that the stigma would not be so prevalent among those whose who are paid to help those who live with mental illness.
He would love to not be mentally ill and would take the cure if he could; but when asked if there was anything positive about having a mental illness he said that in recovering from he has learned to get past very difficult times and have a lot of success in my life that I would not have had otherwise. He has learned how to help himself to the point where he is able to withstand difficult life events.
Rolf says that the stigma is much more disabling than any mental illness because the stigma is what keeps us out of jobs. The stigma also impairs self confidence and self worth. Rolf says that many of us who have been in treatment for so many years label ourselves according to the stigma and then we sabotage ourselves and become more dependent on the care we get. We become afraid to take a risk. Rolf says that this happens when people get rejected so many times due to the stigma that they stop trying. Rolf said we need a better definition of disability and it should not be tied to work because many people can work sometimes and not others. He said the same needs to apply to treatment. People need to be able to access treatment when they need it without having to be in extensive treatment all of the time--however those with lifelong mental illness should not lose all access to treatment just because they are doing well. The old model of mental health treatment was to be in treatment every week or even more frequently. Due to changes in funding treatment is no longer something that one gets every week but one is supposed to be able to go for a few sessions and take what they learn and use in the community. It is more like crisis intervention. Rolf does not see this as all bad and believes that it is OK to reduce frequency of treatment as long as a counselor is available in case something comes up and the client or patient needs to be seen. Using medication is a very individual choice that should be respected. Rolf has chosen to use it and feels he is able to function better because of medication but respects choices made by friends and colleagues and believes that this is a highly personal decision.
Rolf has many other interests. He has a lifelong interest in classical music. He played clarinet for many years and has played guitar for past 16 years. He also enjoys photography and has been published and has had feature articles published in publications that have a broad readership.
As an employee and colleague and member Rolf has been a terrific addition to the CCDC family. He is dependable, reliable, loyal, and hard working. If Rolf says he will do something it will get done and will be done properly. Rolf takes his responsibilities seriously and has always shown the respect for diversity that is such as strong value for CCDC.
April 2012 - Mike Hoover Person of the Month
April is Autism Awareness Month and I asked Mike Hoover to be our person of the month. Usually I ask people questions and then edit their responses into a write up but Mike's responses are so great just as answers that I decided to just leave this question and answer format this time. Let us know if you like this. Mike was one of the first people I noticed in Colorado back in 1994 when I first arrived. I went to a conference sponsored by the Colorado Developmental Disability Council---it was actually a working meeting that led to a group of us creating the CDASS program in Colorado. Mike was there with his mother Donna, who is an amazing and terrific woman in her own right and clearly someone who has played a big part in Mike's success. In those days not much was said about Autism--certainly no commercials on television. I have seen Mike around the capitol and public policy world consistently since that time. Mike has always used his experiences to help others. Mike is out there in the community educating people every day and we are thrilled that he was willing to share more about himself and his disability for our April web site. We will be having a special guest moderator on our Facebook page--another autism expert Betty Lehman. We will be asking you to submit questions, engage in discussion and help get involved in activities to educate the community that people with autism are not broken or defective but different. They may need accommodations but do not need to be fixed as Mike so eloquently explains.
Mike Hoover's Interview
Q: April is autism awareness month: As a person with autism, what do you think others most need to understand about Autism?
A: I think people need to understand that autism is not a disease, it is a neurological condition. It may be accompanied by other disorders such as seizures or gastro issues. People who have autism need to have the society around them respect their rights to be in society. I think I like the increasing awareness that people with autism have gained in recent years to be fully included in much of Colorado.
Q: If there was a cure for autism would you want it? In other words, would you want to be a person without a disability? Explain why or why not?
A: I need to tell the readers that I have been very fortunate to have a supportive family, good schools, and a service provider that listens to my choices. I think I need to tell you there are things I wish I could change, but I have skills that are part of my autism that I have that make my life good. I don't want those things to go away. They are part of who I am. No, I don't want a cure. Just get the world to be a bit kinder, please.
Q: Explain your communication system: How does it work?
A: I communicate in several ways. I have some routine phrases and use them in daily life . People who understand my echolalia ask multiple choice questions so I can echo the answer. Then I also type to communicate on a variety of devices. I use facilitated communication, a method that accesses the rhythm center in my brain to reach my communication ability. I am practicing setting my own rhythm and using less support. I need to tell you it is always my words, not the facilitator. I hope to become more independent and just have my facilitator nearby.
Q: What is one thing you think most of us don't understand about Autism that you want us to understand?
A: The one thing is we are not stupid. The people who do not talk often get treated very badly. Think how your life would be if you could not express your needs and be very respectful to everyone. Don't talk in front of them as if they are not there. I think I love that mom never treated me like I was stupid even though I did not develop typed communication until I was twenty.
Q: What is something that is cool about having Autism?
A: It can be a number of different things. People with autism are not the same. For me I like that I remember things very well. I have the ability to do many things after being shown once. I like being able to find places again after visiting them one time.
Q: Tell us about yourself--what do you do with your time? What are you most proud of? Why do you spend time doing things in the disability community?
A: I am a guy who never grew out of the desire to have fun. I love happy movies, especially Disney and I love going to new places. I love cooking and art and I love going to movies and concerts. I work part time at a brewery. I volunteer at church as a deacon. I was in a play in January. My friend, Jaison Hart wrote the play. I like being on the Colorado Developmental Disabilities Council. I am on the public policy committee. I am a volunteer lobbyist at the Colorado legislature. I am a member of Watch Our Words, a group of communication device users. I have given trainings and presentations in Colorado and nationally. I think I feel that going to these events is what I should be doing to help others get their rights to a good life.
Q: What is a movie or book you have enjoyed recently?
A: I loved the movie Hugo. I loved that the boy learned from watching others and never gave up. I love movies and get to go to only a few a year, but I watch my DVDs.
Q: Who is your favorite hero in history?
A: I think my favorite hero is Bob Williams. He uses a device to communicate and he gets the word out to help change society. I love that he travels all over and gets the message of justice for all people out.
Q: What is a quote that you live by?
A: I think I need to always follow nothing about us without us.
Q: Is there anything else you want CCDC members to know?
A: I need to thank Julie for inviting me to be on the website. I need to tell people that if they feel stuck, do not give up. It can take a lot of work, but together we can find a way.
March 2012 - Suzanne Brennan Person of the Month
Suzanne Brennan is the CCDC Person of the Month for March which is Women's History Month!
Suzanne is our Medicaid director--every time we get a new governor much attention is paid to who will be the Executive Director of the Department of Health Care Policy and Financing--the agency that oversees all publicly funded health care programs. One of the most important things that person does is hire the Medicaid director. No other position has as much influence on our day to day lives as our Medicaid director. CCDC has been pleased with the efforts made by Suzanne, and her willingness to listen and include Medicaid clients in policymaking. When asked how she came to be the Medicaid director she said she felt a pull to make a difference and that it felt like the right thing to do. She had been a Senior Program Officer at the Colorado Health Foundation and was often in conversations about "sustainability" and lamenting that "once the system worked the way it should" there would not be a need for so many grants since people would have access to insurance. When offered the position she saw an opportunity to enter "the system" and work on the fundamental issues around sustainability and coverage.
Her main goals as Medicaid director are to
• Create a high performing department that is operationally excellent
• Provide excellent customer service to stakeholders, customers, and each other
• Work collaboratively as a team
• Empower HCPF staff to be able to do their jobs well and feel good about what they do.
• Help to prioritize what we do and provide focus
• Improve the operations of our Long Terms Services and Supports programs.
She got interested in health care because she enjoys complex challenges and intellectually stimulating work that makes a difference in peoples lives. She worked in telecommunications right after the AT&T monopoly was broken up and saw innovations occur as a result of customer demand. She sees the same opportunities in health care and also saw the gap in data flow and believes that we can improve healthcare delivery if we have better information flowing between providers and clients. She also noticed that there was far too little focus in health care on the patient/client experience. She noted that other professions and even businesses focus more on the customer experience and that we need to create this focus in health care. It needs to become more "person centric"
Back to women's history when asked who is a woman in history you admire and why she pointed to Madeleine Albright, the first female US Secretary of Sate and the highest ranking woman in the history of US Government. Suzanne says that Ms. Albright was very strong and skillful, operating in a highly complex environment. She said "I was just so impressed with how polished she was and the inner strength and fortitude she exuded." Suzanne thinks that while there are still differences for women in management things are much better than when she started in the telecommunications industry. She says she may be less aware of the differences because she is so focused on the work. She also noted that in government and non profit organizations there are more women in leadership.
She has both her masters and bachelors degree from Dartmouth College and had the opportunity to study in France for one semester, an experience she found gratifying. She has worked throughout her career in technology, for profit, non profit, philanthropy and this is her first job in government. CCDC has noticed that she brings a fresh and much needed perspective and most important that her words are followed by actions. She is an independent thinker and an excellent listener. She said that she tries to listen to what every person says for that pearl of information or perspective and tries to open herself up to all types of people. She strives to avoid being judgmental and believes that we only have one life to live so we better make the most of it.
1. When asked what is a quote that she likes to live by she said her favorite was for the book "The Four Agreements" Be impeccable with your word - Speak with integrity. Say only what you mean. Avoid using the word to speak against yourself or to gossip about others. Use the power of your word in the direction of truth and love.
2. Don’t take anything personally - Nothing others do is because of you. What others say and do is a projection of their own reality, their own dream. When you are immune to the opinions and actions of others, you won’t be the victim of needless suffering.
3. Don’t make assumptions - Find the courage to ask questions and to express what you really want. Communicate with others as clearly as you can to avoid misunderstandings, sadness and drama. With just this one agreement, you can completely transform your life.
4. Always do your best - Your best is going to change from moment to moment; it will be different when you are healthy as opposed to sick. Under any circumstance, simply do your best, and you will avoid self-judgment, self-abuse and regret.
Suzanne is an avid horseperson and has three horses, two dogs and three cats--and a husband! She rides year round no matter the weather and has lived in Colorado for about twenty years.
She would like to leave a legacy at HCPF of people feeling proud of the work they do, and to instill the approach of being client and family centered. She wants to see the residents of Colorado believe that HCPF is a well run agency that serves clients well and uses funds responsibly.
CCDC shares these goals and looks forward to continuing to work with Suzanne to make them reality.
January 2012 - Babs Johnson
Babs Johnson is a slight woman who has had an enormous impact on disability rights. With a base in Denver but an impact that spread throughout the country. January is “Independent Living” month so it makes sense that we focus on someone who has been the glue holding together Colorado’s first center for Independent Living.
Babs is currently the interim director of the Atlantis Community. The Atlantis Community is a fixture in disability culture in Denver and is known internationally as the birthplace of ADAPT. Founded in 70’s as the nation’s second Independent Living Center ever since 1980 Babs Johnson has been an important part of this community. She came to Atlantis from Wyoming, where she was born and raised. She had done some disability work in Wyoming working on implementation of section 504—which prohibited discrimination based on disability in federally funded programs and was drawn to disability rights. In the intervening three decades Babs has done almost every job there is to do at Atlantis, starting as an attendant and ending as an interim director. However her rise from an entry level to director position is not what gets Babs excited—what gets her passion going is talking about people with disabilities getting to make choices and have full lives as valued and respected citizens. You can hear the passion in her voice when she tells me what Independent Living means to her—which is that you have control over the decisions in your life, the freedom to live where you want, go where you want and to interact in society.
I asked her what is the biggest change she has seen in our community since she started on this journey and she said that it is that we now have a sense of pride in who we are as a people. She said that we finally know how that we are first class citizens and are entitled to respect for our rights. She said rights include everything from accessibility to housing to having necessary services that support independent living. When asked what things will look like in 20 years if we do our job she said –without hesitation—no more nursing homes. I asked her what she thought of the commonly held perspective that nursing homes are a necessary part of the “long term care continuum”. She said “I don’t believe that because I have helped to provide services for people that no one thought could be served in the community, including one person in a coma and another person who could only communicate by eye blinks. Both of them thrived and improved and the person in the coma became responsive. That would not have happened in a facility. “She went on to say “I do believe that society has engrained in people that they have to go into a nursing home so that they won’t be a burden on someone else” and also spoke of the learned helplessness that is created by institutional mindsets.
Babs feels strongly about the COMMUNITY aspect of Atlantis Community. She raised her children at the office –if you can call it an office because it is really a community center. When I asked her about this –and if it was a deliberate choice to engage her children in the disability community she seemed perplexed. Why wouldn’t I fully engage my family? She explained that Atlantis is a lifestyle, not just a place. The community aspect is extremely important. She said with pride that she has always shared holidays with others from the Atlantis Community and that she believes the sense of community is why it works. About raising her children within the disability rights movement she said “By raising them in the community it gave them understanding and empathy of disability, sensitivity and both are giving, caring people”. She also said that because the work of disability rights, especially being a pioneer and getting people out of nursing facilities, is so intense that a natural closeness forms among those working and those receiving services. Many of those who receive services from the Atlantis Community go on to work there, or at least volunteer.
All of them are members of ADAPT, the activist arm. ADAPT began as Americans for Accessible Public Transit and fought for lifts on busses, with Denver being at the forefront of that fight. Then they went on to be the primary group responsible for getting the ADA passed, then became American Disabled for Attendant Programs Today and now are simply ADAPT. Currently they focus on the right to community based services. “Our homes not nursing homes” is their “tag line”. Babs went on every national action up until the 25th action and stopped counting how many times she was arrested at 35. ADAPT is a huge part of her life and she believes that the activism must accompany the services. As one of the founding members of ADAPT, Babs has seen how direct action works and has helped to use it to change the world.
December 2011 - James McBryan
At 26 years old, Oakland, California resident James McBryan has already contributed so much to his community. He has always had a passion for helping others and wants to change the world in every way that he can, from big to small.
In August of this year, James participated in Project Freshkicks, which paired nonprofits with web development companies that want to give back. James and his team from TechScouts (formerly Twomile) coded for 24 hours straight in order to build a beautiful new website for CCDC. The team was made up of designer Jay Darnell, developer Kevin Major, and James McBryan as project manager and developer. Together they revamped CCDC's website and launched it the next day! They all loved working on the project together and had a great experience.
TechScouts, James' web development company, strives to make an impact on the community and the world by working with social start-ups and entrepreneurs, building products that help the community such as OurVolts (a free volunteer tracking system), and maintaining a pro bono grant program for nonprofits that need websites.
The TechScouts pro bono program is meant to lend nonprofits a hand with updating or revamping their websites. In this day and age, everyone has a website, and so much of people's first impression with a nonprofit is with their website's front page. However, nonprofits often find it difficult to budget for a new website - that is why TechScouts offers a pro bono grant program to which nonprofits can apply.
A little more about CCDC's person of the month - not only is James dedicated to making a difference through his company, but in his personal life as well. James has traveled down to Honduras several times to help a rural school system revitalize their computer network. He even brought down more volunteers through Engineers Without Borders to help make a greater impact not only with their network but their education system as well.
James is also an active, dedicated member of the swing dancing community in Berkeley, California. For several years during his undergraduate studies and as an alum, James taught free informal swing dancing lessons on campus, choreographed performances, and organized a student-run swing class for credit in order to spread his love of the music and the dance to others. James continued to be a part of the swing community by helping to found The Dancers' Den, a beautiful indoor swing dance in a historic ballroom.
All of these contributions to society made it easy for people that know James to nominate and vote for him to be the Taproot Foundation's first ever Pro Bono Role Model of the Year. And he won! James went to the National Conference on Volunteering and Service in New Orleans as his prize and met some great people.
In James' own words, it's all about encouraging and empowering others. "I want to help in the hardest situations, fix the biggest problems in the world, but I can't. Not alone at least. The pro bono activity I contribute to the world is supporting others. I seriously believe helping other people's dreams, being their first follower, and making them feel like a super hero can make the biggest change."
CCDC is grateful to James and his team from TechScouts (formerly Twomile) for their continued generosity. TechScouts has a unique understanding and perspective of the needs of nonprofits. For more information about James, the TechScouts and to see their portfolio, please visit their website at http://www.thetechscouts.com/.
The Goguen-Bolduc Family
November 2011 - The Goguen-Bolduc Family
When told that our family would be featured on the CCDC website for National Caregivers Month, I pondered what made our family unique and qualified to be given such an honor. I was asked to send a copy of a family photo. As I searched through our photos, I realized that there was not have a single photo that I could entitle “our family.” I choice a photo of the adoption of our daughter. It shows my husband and I as parents and several of our children. It shows our precious grandson. Most of all, it shows our family’s growth. Our family has an ever-changing membership. It is not defined by biological connections or even legal definitions. For a time, I would define it as “the Brady bunch” gone awry! When my husband and I first married, it was a traditional blended (more liked diced than blended) family of yours and mine; 3 boys and two girls. Within a short period of time, we would call it “yours, mine and the State’s.” Then there was the young adults who came for dinner and left several months later. We added a “ours” several years later – a child that we call “the keeper” after we agreed to babysit him for a weekend and he stayed for 6 years. We adopted him and held him as he passed from this world. We did not have the privilege of welcoming him into this world, but we had the great honor of helping him pass to his next great adventure. With his passing, we added friends who held us in their hearts during our time of grieving and healing. They became our brothers and sisters as we shared laughter and tears, blessings and heartache, holidays and, of course, lots of food! Our children added a grandson and we expect more grandchildren to expand our family even more in the future. We decided we were not “empty nester” kind of people and welcomed our teenage daughter into our ever growing circle that we call “family.” People enter, leave and re-enter our family for a variety of reasons – through birth, marriage, adoption, invitation, and circumstances in our life or their lives. Sometimes they like us; sometimes they love us; sometimes they get angry at us; sometimes they forgive us. We value each relationship. I believe that is what makes our family unique and worthy of this honor by CCDC.
Some might say that our family is unique in that it is a diverse group of abilities and quirks. We are tall, short, skinny, plus-size, light-skinned, mocha skinned, blond-haired, brown-haired, grey-haired, white-haired, no-haired; we are young and old; we have mental health needs, physical health needs, sensory needs, Autism, developmental disabilities; we have gifts and challenges. We care for each other and we give care to each other. We are all caregivers. We thank you for this honor.
October 2011 - Lloyd Lewis
Since 1945 October has been a month in the United States where we promote the employment of people with disabilities. Yet, only about 17.7% of people with disabilities were employed as opposed to 68.8% of those without disabilities. The unemployment rate stays consistently double for people with disabilities when compared with those without disabilities. There are books, articles, blogs and billions of dollars spent on government programs to combat these horrific statistics. We can all talk forever about the reasons for this. People with disabilities are sick of talk and want action. It is with pride that we introduce Lloyd Lewis as our person of the month for October. Lloyd is a man of action. His action is spurred by intense passion and commitment and the results are amazing. Lloyd is almost halfway through a first term as the President of the Board of the Colorado Cross-Disability Coalition. He is the President and CEO of the Arc Thrift Stores and has been for six years. Arc Thrift is an incredible operation employing more than 1,000 Coloradans, including MANY people with disabilities in their stores throughout Colorado. The profit, which has been increased significantly by Lloyd’s efforts, supports the great work of the Arc and related organizations throughout Colorado. Before coming to Arc Thrift Lloyd worked in the business world, mostly in the financial and technology industries. He has a strong business and financial background including a Masters Degree in Business from the University of Chicago. Lloyd serves on a number of boards including the Mile High Down Syndrome Association and the Colorado Consumer Health Initiative. His favorite and most important role however, is that of a dad. Lloyd has two grown children and two young children. His younger children, seen in the picture, are Aiden who is 5 and Kennedy who is 7. Lloyd loves hanging out with his sons, their bedtime routine, watching them grow and play. What would make someone leave the world of high finance, high tech with the attendant salaries and move to the non-profit world? Disability entered Lloyd’s life when his son Kennedy was born with Down syndrome. Lloyd’s love for Kennedy and Aiden is clear in his face when he talks about them and is obvious to even a casual observer observing them together. Many people become depressed when acquiring a disability or learning that ones child has a disability. There is no doubt that it is a major life change. At that juncture one can sink into a cycle of despair and hopelessness and see disability as a tragedy or one can take action to address any concerns. Lloyd chose the later and has done so with gusto. He does not see Kennedy as tragic or pathetic. When he talks about Kennedy he talks about a sweet little boy who loves to laugh and make others laugh and whose favorite thing to do is dance—so much so that he even would dance to the sound of a garage door opener! Acknowledging the reality that Kennedy and many of us with disabilities will always have a need for supports is different than assuming that we are not only capable of contributing to our communities but are responsible to be engaged citizens. In our society, most people between the ages of 18-65 work or engage in activities to move towards employment such as college, trade school, etc. For this work we need employers willing to hire us and hold us accountable and help us succeed by providing training and reasonable accommodations and most importantly by having high expectations. All too often erroneous assumptions are made that organizations that are mission driven cannot be profitable. Lloyd has proven that to be a fallacy and in fact demonstrates that being mission driven is essential for profitability and productivity.
Since Lloyd became CEO of Arc Thrift he increased employment of people with disabilities from 25 people to 200. With a workforce of 1000 the 200 employees with disabilities work side by side with their non-disabled colleagues. Lloyd is clear that he does not hire people with disabilities out of pity or to be a nice guy. He is a business man and if he does not turn a profit to support the business and the Arcs who rely on this funding it fails. He explains that hiring people with disabilities and being mission focused is good for the bottom line. He says that he hires people who are dedicated, committed team players who contribute to high employee moral. Employee moral increases productivity which in turn increases sales and earnings. When people know why they are going to work each day they do a better job-a phenomena we have certainly seen at CCDC. When asked why he feels that employment should be a priority of the disability community he says “for most people work is one of the major drivers of self esteem and self worth, this is no less true for people with disabilities.”
His dream for Kennedy is he achieves his potential (whatever that is), be happy, appreciated by others in the community, have a job and live as independently as possible.
As CCDC becomes a 21st century civil rights organization we benefit from Lloyd’s leadership. 21 years after the ADA we can no longer accept society relegating us to a status of simply being consumers or commodities rather than citizens. We must have full access and can no longer accept simply not being institutionalized as enough. We need to make sure that all of us have the tools we need to achieve our potential, be appreciated by our communities because we are engaged responsible citizens with a lot to contribute. Clearly Lloyd has a lot on his plate and when asked why he accepted an invitation to join the CCDC board, then the position of Board President he said “CCDC one of the most prominent disability advocacy groups, well respected, a mover and shaker in the disability advocacy community.” When asked about his dreams for CCDC over the next few years his response was that he would like to see a substantial growth in resources, even greater success at the state level, more visibility and awareness of the importance of equality and inclusion of people with disabilities.
CCDC is fortunate to have a man of action, who is deeply passionate about disability rights, with the business background that we need as our Board President.
September 2011 - Ron Hutter
Ron Hutter is the first CCDC member of the month. Ron won the Dan Davidson Award for Inclusion in Employment in July. Ron got his job with the Cherry Creek School District about the same time CCDC was founded, in 1990. He has kept the job for 21 years. I asked Ron why he works and he answered with a chuckle that it keeps him from being a couch potato. On a more serious note, he talked about how he has developed friendships in the workplace and that he loves children. His particular job is assisting children with disabilities on the school bus and Ron lives to help others.
I asked Ron, why he wants to help others so much –knowing that so many in our society are not interested in supporting neighbors, coworkers, or even family members. He was shocked at the question and said that helping people when he can, how he can and where he can is just who he is—a core component of his personality. Anyone who has met Ron will know this to be true. I cannot remember any CCDC event since Ron joined where he has not come in cheerfully, given me a hug and asked what he can do to help—and whatever it is that is asked he does it with a smile. He says helping people and just being part of the workforce is more important to him than the paycheck. He does earn a real living and the paycheck is important, it simply not the only reason he works.
It was not surprising, when asked why he is a member of CCDC that he answered that being part of CCDC helps me to help others. He also said CCDC stands for something good for the people who are disabled. He became involved with CCDC after his older brother joined the organization.
Ron has several hobbies. His family has owned an auto repair shop since the 60’s so fixing stuff was probably in his blood. He took apart his first carburetor at age six. He also likes to work on computers and loves trucks. His other big hobby is sports and he has participated in Special Olympics since he was eight years old. He does cross country skiing, snow shoes, bowling, cycling, golf, and swimming. He used to coach basketball but has not had time lately. He trains for each event in between competitions, and each training session lasts for eight weeks. Sometimes he trains for two sports at once.
I asked him what is different for kids today than it was for him as a child, growing up with a disability. He said that when he was a child most disabled children were institutionalized. He proudly mentioned that his parents would “never let that happen”. He was proud that the school district he works for, (Cherry Creek) has been recognized for having quality programs for children with disabilities.
CCDC member Donna Sablan presented the Davidson Award to Ron and referred to him as a hero. Ron said “I don’t see myself as a hero—I don’t know what it is like to be without a disability. I only know my life as it is and I like my life.”
I nominated Ron for the Davidson award because he is a perfect role model for a modern person with a disability. He works at a mainstream job with equal pay. He will advocate for himself and others as needed, and does not see his disability as a reason to be less than anyone else. He is proud of taking extra responsibilities at work as needed. While he is fully integrated at work, he has not distanced himself from the disability community, rather he embraces it. Too many of us have acted as if integration must be all or nothing. Folks who get mainstream jobs often distance themselves from the disability community—conversely some of us in the disability community are too insular and do not venture outside of our world enough. Ron strikes the perfect balance and is a role model. He does not separate who he is from his disability and does not see his disability as a deficit.