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Lawmakers Hear About RTD Service Cuts’ Impact on Those with Disabilities

Picture of the Denver RTD's Light Rail

On Monday, the Transportation Legislative Review Committee heard about the Regional Transportation District’s proposed service cuts, as well as their effect on customers with disabilities.

“Without RTD, our ability to really reap the promises of the Americans With Disabilities Act, which turns 30 next year, is gone,” said Julie Reiskin, executive director of the Colorado Cross-Disability Coalition, as reported by CPR.

“Because we can’t get to work, we can’t get out, we can’t go spend money in the community, we can’t get to medical care. Transportation is really the key to independence and full community participation.”

Due to a shortage of bus and rail operators, RTD is looking at temporarily reducing service as early as 2020 to cut back on mandated overtime for existing employees. The transit system is already forced to drop runs due to short staffing.

RTD’s presentation to the committee referenced “low unemployment impacting [the] labor force nationwide,” and stated that “[f]atigue is affecting quality of life and safety.”

The agency said that their system-wide service availability — the amount of time that routes run as advertised — is 99% for buses, 98% for light rail and 98% for commuter rail. Commuter routes operate under a public-private partnership and are not part of anticipated cutbacks.

Reiskin said that Access-A-Ride, RTD’s door-to-door bus service for disabled customers, has combined trips recently due to the driver shortage. An RTD spokesperson could not confirm whether that was the case.

Transit Riders With Disabilities Tell Lawmakers Just How Painful RTD’s Proposed Service Cuts Could Be

Picture of Julie Reisking at home, trapped without transportation

“There is nothing more important than RTD.”

That’s what Jule Reiskin, executive director of the Colorado Cross-Disability Coalition, said just a few moments after she testified before lawmakers Monday about a recent proposal from the Regional Transportation District that would significantly curtail service.

Reiskin, who uses a wheelchair, told members of the Transportation Legislative Review Committee that the spotty service on RTD’s fixed-route buses and light rail trains because of an ongoing operator shortage in recent months is nothing new to riders with disabilities.

“What we’re seeing with fixed-route cancellations, we’ve been seeing for years with Access-A-Ride,” Reiskin said, referring to RTD’s paratransit service.

Access-A-Ride provides door-to-door service for disabled patrons who can’t use RTD’s other services. And RTD has been combining trips recently because of driver shortages, Reiskin said.

“Sometimes people can be on the van for two hours for a trip that could take 45 minutes,” she said.

Picture of an Access-A-Ride shuttle in the street

Earlier this month, RTD staff proposed temporary service cuts as a last-ditch way to give its overworked drivers a break. The agency is short about 160 drivers and has been forcing many of them to work six days a week for years to keep up with current service levels. That proposal is still in its early stages. The RTD board will hear a more fleshed out version of it in December.

Reiskin told lawmakers Monday that RTD should commit to not cutting Access-A-Ride at all, and should do its very best to not reduce any service.

“We think it’s a really bad idea,” Reiskin told CPR News. “We think that they need to work with the union on other ways to be retaining drivers.”

Any sort of cut could have a ripple effect on riders with disabilities, Reiskin said, because many people who can’t drive for medical reasons rely on RTD’s buses and trains. And Access-A-Ride is only available to patrons who live within three-quarters of a mile of a fixed-route service line, so cuts to those could curtail the reach of the paratransit service.

“Without RTD, our ability to really reap the promises of the Americans With Disabilities Act, which turns 30 next year, is gone,” Resikin said. “Because we can’t get to work, we can’t get out, we can’t go spend money in the community, we can’t get to medical care. Transportation is really the key to independence and full community participation.”

RTD spokeswoman Pauletta Tonilas said she couldn’t say whether driver shortages have affected Access-A-Ride, but she said the agency is very aware of the importance of that service.

RTD Board Chair Doug Tisdale, left, and General Manager Dave Genova, right, speak to the state Transportation and Legislative Review Committee on Monday, Oct. 28, 2019

“These are folks who are some of our most transit-dependent. We obviously are very careful about what we do to impact them,” she said. “However, day to day, it’s tough to predict what’s going to happen with any of our services.”

Tonilas said Reiskin and others are welcome to give RTD their thoughts in coming weeks as the proposal takes shape.

“This is an unfortunate situation that we don’t want to be in,” Tonilas said. “But we have a responsibility to look at what we can do to try to solve the situation.”

RTD officials mentioned the proposal in its own presentation to the Transportation Legislation Review Committee on Monday, which drew some critical questions from lawmakers.

“It sounds to me, though, that the temporary designation is based on hope,” Democratic Rep. Matt Gray of Broomfield said.

RTD General Manager Dave Genova said RTD has some new ideas, including hiring temporary employees. Board Chair Doug Tisdale replied that the board has committed to a firm end date to the service reduction.

“We will give this a stated amount of time, and look to staff to deliver those results,” Tisdale said.

Read the original article by clicking here.

GATEHOUSE INVESTIGATION: Airlines Damage Thousands of Wheelchairs

Pictures of an American Airlines airplane taking off,
In the first seven months of this year, American Airlines had the worst record of transporting wheelchair, mishandling 1,846 devices –Or 3.7% of all the mobility aids it gate-checked. [AP PHOTO/FILE]

Pueblo advocates among flyers who’ve experienced losing mobility far from home

After a United Airlines flight three years ago, Isabelle Briar ripped open her thumb as she pushed her wheelchair away from the gate. The airline had cracked the metal grip ring, leaving a sharp, protruding shard.

The same airline ignored Cindy Otis’ complaints about damage to her power chair in 2006, responding weeks later and only after she had an attorney write a letter threatening to sue.

In 2017, U.S. Sen. Tammy Duckworth, D-Illinois, boarded a flight hours after writing federal Transportation Secretary Elaine Chao. Duckworth wanted to know why the agency again delayed requiring airlines to track damage to wheelchairs and scooters.

Upon landing, the Army veteran and amputee noticed her wheelchair no longer moved.

“They bent the metal bracket with the casters,” Duckworth said. “We’re talking about heavy-duty metal. I wonder, how are you managing to break these chairs?”

Last year, Duckworth slipped a provision into the reauthorization of the Federal Aviation Administration. It requires major commercial airlines to track mishandled mobility aids for the first time. Each month, airlines must tell the DOT how often they gate-check wheelchairs and scooters, as well as how often passengers report those devices as damaged, lost, delayed or stolen.

That requirement took effect in December, but some airlines reported challenges providing accurate figures that month.

However, between January and August— the latest month for which data is available — U.S. carriers reported having mishandled at least 6,915 chairs. That’s an average of 29 times a day.

While it’s just 1.6% of the chairs and scooters checked on flights, more than a dozen travelers told GateHouse Media that damage to their mobility aids can have significant medical, emotional and financial consequences. Some avoid flying altogether, saying the risks are too great.

“They are essential mobility equipment. It’s important stuff,” said Ben Mattlin, a Los Angeles writer and power chair user. “God, if that many pets were injured every day, it’d be an uproar.”

Duckworth said the general public fails to grasp the severity of the situation when a wheelchair is damaged or lost.

“Imagine if in a single year (that many) people had their legs broken by an airline as a result of flying,” Duckworth said. “The effect is the same.”

United Airlines did not respond to multiple requests for comment.

Not an object

Travelers said people often see their chairs as objects rather than critical, customized extensions of their bodies that enable independence.

“We literally cannot function without them,” said Briar, a video game streamcaster from Nebraska.

Because wheelchairs are not one-size-fits-all, they can take weeks to repair and sometimes cost thousands of dollars to replace a single part. Daily users require devices that routinely cost as much as a car, and the most specialized power chairs might cost as much as a small house.

If the damage from a flight isn’t immediately devastating, or if airlines refuse to pay for repairs, some people said they have lived with broken mobility aids.

Duct tape holds together a key metal beam of Briar’s wheelchair.

“Because of the nature of the way the chair fits, I didn’t realize my seat was missing half of its support until I transferred back into it in the (airport) bathroom,” she said.

United Airlines nearly lost the metal rod in a plane’s cargo hold, she said, and refused to pay for repairs. Staff members used duct tape to hold the support rod in place instead, she said.

Noting the prohibitive cost to repair it and the days she’d be without her aid, Briar said, “I’m still using it in that condition.”

Tips for Pueblo travelers

Though she has not heard of cases specific to Pueblo, Kristen Castor, nonattorney advocate for the Colorado Cross-Disability Coalition, said airline damage is a reality for many wheelchair owners.

“If they don’t have a wheelchair, they don’t have mobility — and they have been tossed out of the airport without their wheelchairs,” she said. “I’ve got a story from New York: One of the activist friends I work with, her chair was destroyed by the airline. She finally has gotten a chair from them, but it takes a long time to fight that.”

Wheelchair pieces including armrests, footrests as well as the electronic controls on powered wheelchairs are especially vulnerable to damage, Castor said. She also recommends that wheelchair owners dismantle the chairs themselves before boarding a plane.

Julie Reiskin, executive director for the coalition, boards a flight once a month on average and said she has experienced damage to her wheelchair after flying on two occasions.

“In both cases the airlines did take responsibility to pay for the repairs; however, in both cases my chair was still functional, so I was not in a situation of being in a strange city with no workable chair,” Reiskin said. “That is my worst nightmare.”

“Some people can walk a bit or can use other chairs, but many of us who are considered ‘full-time’ wheelchair users have customized seating; so we cannot sit in any chair that is not ours — at least not without risking injury or at least serious pain,” she said.

To avoid damage, Reiskin said she takes severe precautions when traveling with an airline. Before flying, she brings laminated instructions on chair maintenance with her, removes the headrests and footrests, informs airline employees and arrives at the gate two hours early.

“Most of us who travel a lot probably are living closer to the city, but there may be folks in Pueblo that are active travelers,” she said. “I think it is much worse for those who are not active travelers, because they do not have all of the tips and tricks about how to travel with a motorized wheelchair.”

Undercount

The real number of mishandled wheelchairs is likely much higher than 29 per day, said advocates for people with disabilities.

That’s because many passengers don’t formally report damages to the airlines. Other times, the damage might not immediately be apparent.

Eric Howk, a guitarist for popular rock group “Portugal. The Man” flies more than 100 times a year.

Even though his manual wheelchair is often damaged and delayed while flying, Howk said he never has filed a federal complaint or requested a Complaint Resolution Officer ⁠— staff members trained to resolve disability-related issues. He notes he is lucky to have the physical ability and financial means to fix most damage himself.

That said, he currently sits in a replacement chair provided by Alaska Airlines.

“I watched a ground crew member snap the back off the chair,” he said.

Alaska Airlines, which reports damaging fewer than 1% of mobility aids, said in an email that it’s “always committed to improving where we can – especially in this area.”

In the first seven months of this year, American Airlines had the worst record, mishandling 1,846 devices — or 3.7% of all the mobility aids it gate checked.

“We are working hard to build tools and training so that every wheelchair is returned to the passenger in great condition,” an American Airlines spokesperson wrote in an email. “This data and other information are being used to develop a comprehensive plan for improving the customer experience for the long term.”

Several airlines ⁠— Allegiant, Hawaiin, JetBlue, Spirit and United ⁠— did not respond to multiple messages seeking comment on the new federal regulations.

Hope for change

Duckworth hopes the new requirement will help federal regulators better monitor the issue and identify ways for airlines to improve, as well as empower travelers to make informed buying decisions.

“Ultimately,” she said, “it’s about treating medical devices with respect.”

A USDOT spokesperson said by email that the agency publishes the data in its monthly Air Travel Consumer Report but did not mention any other plans for the new information.

Presidential candidate Beto O’Rourke, a former Texas congressman, announced in a blog post Tuesday that he would strengthen enforcement of the Air Carrier Access Act, among other policies, if elected.

Chair users have their own common-sense solutions they say airlines should adopt, such as adding a special section in cargo holds to safely secure mobility aids away from other luggage. Others said airlines should store folding manual chairs in the cabin rather than the cargo hold — something already required, but rarely followed, under federal rules.

The most popular solution: Let passengers keep their chairs and sit in them during flights.

“They don’t demand anyone else to put their legs in cargo, but they do when your legs are wheels,” said Jennifer Brooks, a power chair user from Syracuse, New York.

Some wheelchair users said they are exhausted and skeptical about the likelihood of change.

“There have to be consequences,” said the East Coast cybersecurity expert. “They’ve had anecdotal data for years at this point. … We know what the data says already. We know what’s happening. There needs to be some enforcement.”

This story is the first in an ongoing series. Fill out this short form to share your story of flying with a mobility aid or to tell the reporter what questions you would like answered in future stories: http://bit.ly/ChairTraveler. Jessica Fraser can be reached at jfraser@gatehousemedia.com or 941-361-4923.

jbartolo@chieftain.com

Twitter:@jamesbartolo6

 

Original Article, click to read

Our Friend, Colleague and Teacher, Sheryle Hutter

Picture of Sheryle Hutter

CCDC is saddened to announce the passing of disability rights all-star Sheryle Hutter.   Sheryle was a CCDC staff member until last year, before that she was a Board Member, and dedicated volunteer advocate.  Among her many significant accomplishments was the development of our current advocacy training program.  Her efforts made it a professional level class, eligible for continuing education units from the University of Denver.  Sheryle developed the curriculum in partnership with the University College at DU and created enough evidence-based curricula with a robust evaluation to qualify it for a college-level class.

Sheryle was born on September 26, 1944 and died October 13, 2019.   She was married to the love of her life Don Hutter on January 27, 1962.  They renewed their vows this past January.  She leaves behind two sons, Don Jr, and Ron Hutter.  Ron works as the CCDC event assistant and is on the Arc of Aurora Board of Directors.  He followed in his mother’s advocacy footsteps, something that made Sheryle very proud.    Sheryle is also survived by all five siblings:  Vicki Shultz, Pam Farnoik, Tommy Collins, Scott Collins and Brent Collins.  She leaves behind many nieces and nephews, colleagues, friends and admirers.

Sheryle’s professional history began when she owned and operated a square dance shop, then had an interior design business and finally became a grants manager for the Cherry Creek School district where she worked for more than 30 years.    Sheryle poured her significant talents into several organizations as a volunteer.  She was involved with Special Olympics for more than 30 years.  She started the program in the Cherry Creek District and there are now over 10,000 athletes participating across the state.   Her son Ron is an athlete and coach with Special Olympics.    Sheryle was a leader in the all-volunteer organization PADCO (Parents of Adults with Disabilities of Colorado).  PADCO takes strong unapologetic advocacy positions.   Sheryle and founder Dr. Denver Fox uncovered fraud in the intellectual and developmental disability (I/DD) system that was later verified by government auditors.  She found a glaring error in legislation missed by several professional lobbyists that took needed services away from hundreds of individuals with intellectual and developmental disabilities (I/DD) and she forced a correction to maintain needed services.

Sheryle was involved in many capacities with the Colorado Cross-Disability Coalition.   She joined as a volunteer in the late 90’s, later she served on the Board of Directors and acted as Treasurer for several years.  After her retirement from the Cherry Creek School district, she threw herself into advocacy, lobbying on behalf of CCDC, and creating the advocacy training program that is in place today.    Sheryle was also involved in local Arapahoe County and City of Aurora politics.  Sheryle has mentored and encouraged many people with disabilities and parents of people with disabilities.  Sheryle had a strong sense of disability pride, and that is evident in the work of her son Ron.   Sheryle was passionate about improving the quality and accessibility of health care, enforcement of the American’s Disabilities Act, and ethical and transparent behavior of nonprofits that are funded to support people with disabilities.

Sheryle has received several awards for her work in the disability community including the Dan Davidson Award given by the Colorado Developmental Disabilities Council and the Lucile Weiss Memorial Award for Education from CCDC.  Sheryle will be dearly missed.  In lieu of flowers, the family asks that people honor Sheryle by voting, becoming active and involved with your community and doing something to improve health care and access for people with disabilities and/or senior citizens in your communities.

‘The system is broken’: Medicaid buy-in age limit forces disabled to become impoverished

By: Jaclyn Allen

Picture of Curt Wolff working on his desk, using a tablet

DENVER — It is a terrible choice: either give up on work or lose the health care needed to live. For a small group of Coloradans, it is a choice that looms large as they approach the age of 65.

“I really want to keep working. I enjoy it,” said Curtis Wolff, who became a quadriplegic seven years ago, after surviving the West Nile Virus. “I am still able to do a lot of things. I am a trainer for a contractor for the State of Colorado.”

But certain health care expenses aren’t covered by insurance, including wheelchairs and personal care. Fortunately, Colorado has a Medicaid buy-in program for working adults with disabilities,which allows Wolff to keep making and saving money and still get Medicaid benefits.

But there is one major problem: the program ends when people turn 65 years old.

“This program is only good until age 65, and I can’t even retire until 67 in the first place,” said Wolff, who said that even after that, Medicare will not cover long-term care expenses and other benefits that Medicaid does.

If he wants to keep receiving Medicaid after he turns 65, he has to get rid of all assets over $2,000.

“Really, after working hard you whole life you basically have to lose everything in order to just survive. It’s just not fair,” he said.

Josh Winkler with the Colorado Cross-Disability Coalition (CCDC) said federal lawmakers probably assumed people could get on Medicare at 65 or that many with disabilities would not live past that age.

“As set up right now, the system is broken,” said Winkler, who said a bill drafted at the federal level to change the 65 age limit has gone nowhere. “I know several people who have worked for 20 plus years with their disabilities, and their plan is to die before they turn 65 because they don’t have a plan at 65.”

CCDC is looking for a state solution, allowing people to keep working, keep their assets and keep buying in to Medicaid if they have already been part of the buy-in.

Nearly 9,000 people take part in the Medicaid buy-in for working adults with disabilities, but Winkler said that probably only a few dozen Coloradans would need the age limit extended beyond 65.

Winkler and Wolff believe it could save the State money in the long term, and CCDC is working on drafting legislation at the state level and finding a lawmaker to sponsor it.

“Something needs to change,” said Wolff, who is about to turn 63 and just hopes the change happens in time for him. “I might have to go to a nursing home and that would be the worst-case scenario and I really don’t want that to happen.”

Original Article by Denver 7 TheDenverChannel.com

A Door Opener

by Haven Rohnert

After a decade of being a stay at home parent, when I was 19 to 29, my children’s mother and I parted ways. It was the first time I had to survive on my own, with complicated medical conditions, hundreds of miles away from close friends and family. 

I got on a hospital’s program for people with low incomes, which provided me the minimum medical treatment to survive. When I secured SSI, during these rough times, I received Medicaid which gave me better coverage, to combat my disabilities.

I stopped having the type of seizures which caused me to wake up in the hospital many times. I still had 3 to 5 partial seizures a week, so I and my neurologist discussed surgery as an option. 

I had my first surgery and that stopped every type of seizure, for over a year. After I started having symptoms that felt like a seizure could come on but never did, we discussed having a second surgery. I had the second surgery. In about a week, I will have a hospital stay to see if it’s safe to start tapering off one medication at a time. We started tapering of one medicine approximately 7 months ago, but I had reactions which may be seizures or possibly just withdrawal symptoms. Being monitored in the hospital will let doctors and I know what causes the reactions.

Through all this, Medicaid has been by my side and has kept me safe and provided treatment that I couldn’t afford with other insurance. Medicaid has also been great for preventative treatment that has allowed me to raise my kids and work safely for over 11 years. With Medicaid’s 1619 B program, which allows people with disabilities to keep their insurance, after surpassing the income limit, if a person cannot work without the coverage, I was able to work my way off all other government benefits. I am happy to pay for my insurance now, through the Medicaid buy-in program. Medicaid is a lifesaver and a door opener. 

**All Blogs reflect the opinions/experiences of people with disabilities or family members of people with disabilities. They do not reflect CCDC’s official position on any portion of Medicaid services.

Investigative Report on Immigration Detention Released Today, Sept. 18, 2019

CCDC wants to thank the ACLU of Colorado for your groundbreaking (and heart breaking) expose.   We are proud to partner with this great organization and with CREEC who is also doing this work and look forward to working with anyone interested to assure that immigrants and asylum seekers with disabilities are treated fairly and humanely.

Rise Up fist, it reads: Nothing About Us, Without Us, EVER!!
Rise Up fist, it reads: Nothing About Us, Without Us, EVER!!

 

———- Forwarded message ———
From: Rachel Pryor-Lease <rpryor-lease@aclu-co.org>
Date: Wed, Sep 18, 2019 at 10:52 AM
Subject: Investigative report on immigration detention released today
To: Julie Reiskin <jreiskin@ccdconline.org>

Today marks the release of our investigative report about the GEO immigration detention facility in Aurora: Cashing in on Cruelty: Stories of Death, Abuse and Neglect at the GEO Immigration Detention Facility in Aurora.

The report is based on a nine-month ACLU of Colorado investigation, which included a lawsuit against ICE under the Freedom of Information Act (FOIA) for records about Mr. Samimi’s death and interviews with dozens of victims of mistreatment. The investigation revealed numerous stories of medical incompetence, dental neglect, inadequate mental healthcare, lack of accommodations for detainees with disabilities, as well as substandard care that contributed to the suffering and death of Kamyar Samimi, a Lawful Permanent Resident for more than 40 years.

Cashing in on Cruelty provides a set of recommendations to improve state and local policy, including increased oversight and accountability of ACDF, divesting from investments in private detention operators like GEO, funding for legal counsel and bond money for detainees and limiting local cooperation with ICE. The policy brief enumerates ways that Colorado cities, counties and the state should respond to the expansion of private immigration detention centers to improve conditions of confinement and reduce the number of people who end up separated from their families and communities or worse — dead.

Read the report and learn more, including actions to take and know your rights information at: https://www.allarewelcomeco.org/.

 

As a reminder, we are having an informal breakfast this Friday, September 20th from 8:30-10am to hear from the staff that worked on the report, as well as learn more about our next steps. Please let me know if you would like to join us.

Thank you for your support, so that we can continue to do this critical work.

Best,

Rachel

Rachel Pryor-Lease

(Pronouns: she/her/hers)

Director of Philanthropy

American Civil Liberties Union of Colorado

303 E. 17th Ave., Suite 350

Denver, CO  80203-1256

(720) 402-3105

rpryor-lease@aclu-co.org

 

Because Freedom Can’t Protect Itself

Follow us on Twitter and Facebook

Sign up for e-alerts and support our work at www.aclu-co.org

 

P.S. Please join us at our annual Bill of Rights Dinner on Thursday, September 26th at the Ritz-Carlton Hotel Denver. For tickets and more information, visit: https://aclu-co.org/events/bill-of-rights-dinner/.

Motivational Speaker, Performer, Music Teacher

by Gail Hamilton

 Title of your position:

 Motivational Speaker, Performer, and Music teacher

Is this a current position or a position you held in the past?

 Current

Brief description of your duties:

 

I write and edit materials, emails and social media, phone calls, manage one-person staff, prepare and polish presentations, support all types of people with various mental, emotional, age, and physical disabilities.

 

Required experience/ education/ skills needed  for your position:

 

 

  • Expert in my field-MA in Psychology and counseling and MM in vocal performance
  • Published my memoir “Soaring into Greatness, a Blind Woman’s Vision to Live her Dreams and Fly”
  • Member National Speakers Association; and National Speakers Association of Colorado-NSA Colorado
  • Graduate of Colorado Speakers Academy
  • Previous engagements in Colorado, Florida, Indiana, North Dakota, and California.
  • Fourth Runner up in the National Ms Senior America Pageant
  • Almost forty years teaching individual and group piano lessons to children, adults, and seniors

 

 

Accommodations/modifications which allow you to perform your job/position

 

Computer with screen reader/JAWS

AIRA; sighted assistance on demand – assist on and off stage, traveling, office work and more.

Professional assistant

iPhone

Braille computer

Seeing Eye dog and/or white cane

 

How many hours a week do you work?

 

Outside the office, minimum 2/two; maximum 10/ten; however, this does not count the forty hours plus at home working.

 

What is a challenging aspect of your position and how do you work around it?

 

Obtaining sighted assistance for computer, websites, research, filling out contracts and promotional materials.

I’m getting around this by recently hiring an assistant and begun to use AIRA; however, I still need to acquire more visual help at a lower cost.

 

What is an enjoyable aspect of your position?

 

 Enjoyable aspect is touching and changing lives. Giving people the motivation to overcome and change any situation they find themselves facing. Giving others hope and knowledge they aren’t alone. And, inspiring them through my singing voice.

 

Anything else you want people to know about your position.

 

People who are blind face 90% unemployment rates still in 2019. Because of this, we sometimes are not seen as capable or valuable in the workplace. Most times, we are loyal, committed, and hard working. Accommodations allow us work and participate. We want to be seen as capable and work to be viable.

Medicaid, the Good and the Bad

by Kristy Arellano

My name is Kristy and I am a volunteer advocate for Colorado Cross-Disability Coalition.  I am also a mother to daughter with a severe brain injury who requires 24/7 care for all her needs.

When I was little we did not have healthcare insurance.  I remember going only once to the doctor when I had a bad case of strep throat.  We rarely went to the dentist and for the most part we all were healthy and able to avoid needing health care.  Looking back now I realize we were poverty level and very well could have qualified for government services.  We never wanted for anything as my mom was a careful shopper who frequented thrift stores for most of our clothes and worldly goods.

Fast forward to May 2013.  I was a working mother of three when my daughter was permanently injured during a suicide attempt.  She lost oxygen for an undetermined period of time causing a severe brain injury.  She spent a total of about 8 months in the hospital during the first couple of years after her injury. At the time we had Kaiser insurance through my employer.  

I had no idea how we were going to make it through such a tragedy, emotionally or financially but I knew we wouldn’t give up!  I remember receiving a letter from Kaiser during the first hospital stay, which lasted 4 months, stating we had exhausted our rehabilitation services.  I remember the terror I felt at that moment knowing we could not possible care for our daughter on our own.  I was scared the hospital would refuse to continue to treat out daughter and that we might be discharged with a 14 year old that needed round the clock care just to survive.  Insert a hospital case worker.  She explained that our daughter would qualify for Medicaid based on her disability.  After jumping through the required hoops and getting misinformation about a variety of waivers we eventually navigated our way through the process to get her set up in the system.  

She is now days away from turning 21.  Her health has improved, but she still requires 24/7 care to ensure she doesn’t end up back in the hospital. I am so thankful for everyone who went before us to fight for these benefits and for those who continue to fight for them.  I still struggle with resources to navigate the changing landscape as she moved from children’s services into adult services.  Currently we have 22 hours daily approved nursing that decreases to 16 hours once she turns 21 because magically as an adult she will no longer need the level of care that she once did, right?It is a constant challenge to find and keep qualified nurses to care for her and never have we had staffing for all the hours she has been approved for.  Low wages and minimal employment benefits through the agencies make home health nursing jobs less desirable then what hospitals and other institutions can provide.  We are consistently scrambling to find ways to supplement what she needs by what’s provided.  

Medicaid has been a huge blessing to our family.  With Medicaid we have been able to bring our daughter home and for the most part have the supplies, medication and services that we so desperately needed to continue to care for our daughter.  We have learned about state Medicaid and strived to educate ourselves about the variety of waivers she has been eligible for throughout the years.  It has been a huge struggle to educate ourselves to make the best decisions about what she needs and then to advocate so that we can get the right medical equipment, in home assistance for care, medications and daily supplies.  I had to quit my full time job just to manage her care and ongoing needs.  I fight weekly with providers, insurance and/or Medicaid to ensure she has her basic needs met.  While it’s not a perfect system, I don’t know how we’d manage without Medicaid to give our daughter a comfortable meaningful life at home, where she belongs, with her family.

**All Blogs reflect the opinions/experiences of people with disabilities or family members of people with disabilities. They do not reflect CCDC’s official position on any portion of Medicaid services.

My Perspective – Living in the Intellectual/Developmental Disabilities System

By Jeanie Benfield assisted by Jo Booms

I value my Medicaid and realize I’d be in an institution without it. But it’s not enough to create a system to serve people with Intellectual and/or Developmental Disabilities (IDD) and then let it run amok because society doesn’t value the people the system was set up to serve.  I am now lucky enough to have services through excellent agencies – but for most of my life, I didn’t.  Most people don’t have any idea how bad it is in the IDD system. The problems are due to massive problems in oversight plus the system’s refusal to pay direct care workers a skilled-job wage. The wage problem makes it so that people with IDD often have no choice but to receive services from the very people they should most be protected from. When we do come across outstanding direct care workers, we value them – but the system as a whole does not. I have an assistant, Jo. Jo has worked with me for 21 years in various capacities (paid and unpaid). I have a severe speech impairment due to my disability.  Jo is one of only a few people who can interpret for me on the level I need. The system pays her $12/hour to do this. I can trust her with my life, and the system pays her $12/hour.

It is difficult to find great direct care workers who will stay in this field; they’re not paid a living wage and the system makes the job hellishly stressful. The lack of quality direct care workers has a horrible effect on quality of life for people with IDD. You’d think that overseeing agencies would know about these problems – but they don’t, because what the agencies oversee is largely paperwork. If the paperwork’s ok, the overseeing agencies think that means the clients have great lives. What the system doesn’t understand is that what doesn’t make it onto paper doesn’t get reflected in the statistics. Abusive direct care workers aren’t going to write on an Incident Report (IR) that the reason Client A hit Client B is because the direct care worker was rude and insulting to Client A. This is a true story; I’m Client B. Client A is a sweet person whom I love dearly. She asked the worker if she could go trick-or-treating. The worker could have politely and respectfully explained that Client A is too old to go trick-or treating and then said something like, “You’re always so good at helping give out candy when trick-or-treaters come to the door. I was really hoping you could help me out with that”, or the staff could have reminded Client A that she always has a great time at the ARC Halloween party and that she receives many compliments on her costumes. There are any number of ways the worker could have redirected Client A appropriately. But instead, the worker chose to speak to her scathingly. Disabilities don’t prevent people from having feelings. When Client A gets upset, she flails her hands like a toddler. I happened to be in the way. It wasn’t intended as a hit, and didn’t hurt or leave a mark. But the staff counted it as a hit, wrote an IR, and tried to pressure me into calling the police and pressing charges because “Client A needs to know there are consequences when she hits”. I was like, ‘What the hell???’ I refused. The staff got mad, but oh well. I’m not about to press charges against another client because of something a worker did wrong. I told the residential director what really happened, so Client A ended up not being in trouble over it. But when there’s no one to witness or report or when there’s no one who cares enough to take witnesses seriously, clients get in trouble, daily, for crap that staff pull. Many clients are on behavioral programs to address, repress, and extinguish their understandable reactions to being treated like crap by the direct care workers who are supposed to be providing them with quality care. Many of these same clients are on psychotropic meds to make them acquiesce to workers treating them inappropriately on a daily basis.

It’s not right, but officials don’t want to hear about the problems. When clients, family members, and guardians try to tell state-level officials about problems in the IDD system, the state dismisses our testimony as “anecdotes”. We are not anecdotes. We are human beings who, through the blessing of Medicaid, are trying to experience the inalienable rights granted to us by our country’s constitution. Medicaid is a huge step forward in our quest for equality. But existence of the program alone isn’t enough; it must deliver services in ways that uphold the dignity of the human beings it serves.

 

**All Blogs reflect the opinions/experiences of people with disabilities or family members of people with disabilities. They do not reflect CCDC’s official position on any portion of Medicaid services.”


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