Colorado Cross Disability Coalition State Meeting 2009
Meeting Notes November 16, 2009
Introduction and reporting:
MARK SIMON: Mark is an independent advocate “wild eyed heretic and rabble rouser” and reported on two primary accomplishments:
The Colorado Alliance for Health and Independence (CAHI) is a primary care program to bring appropriate health care for people with disabilities. CCDC helped create this and we are one of the appointing authorities for the board. CAHI has been ready to start serving clients for months and is being held up by problems with Medicaid staff.
Pinnacol—this is the state workers compensation company that had amassed millions of dollars in surplus. The state wanted to use these funds to help with the budget but Pinnacol and their lobbyists fought really hard and that idea died (but may come back this year) but instead an interim committee was formed. Mark was appointed to this committee and we should expect to see several pieces of legislation that we will support out of this committee.
Joe Beaver: He is President of the Board and is here to listen and wants to represent voice of the CCDC members
Rolf Kotar: He is the mental health policy liaison. He goes to meetings and writes reports and represents CCDC. He is on the Mental Health Planning and Advisory Council which is charged with overseeing the mental health system; they meet regularly with legislators and other community officials; consumers have been able to block organizational members from getting non- mentally ill people on who only have substance abuse issues—Rolf got two mentally ill people appointed. One did not stay but the other is very interested and doing a lot with the legislative subcommittee. The other regular meeting is the Medicaid advisory committee. He got more consumers on the committee and they came up with process for consumers to apply to be on the committee. CCDC submitted substantial comments on the waiver renewal. He also served on the mental health and substance abuse roundtable that originally was going to tax millionaires for mental health. This is not going to happen and they started again but he does not have hope for this second cycle.
Sheryle Hutter Vice President of Board
Henry Grater is on the board and lives in Western Colorado.
Deb Lane new president of Deaf Gathering in Pueblo, also Glenda Lucero and representative also,
Amy Flynn is an intern and has been taking the advocacy class and wants to be an advocate.
Kevin Williams is the legal director.
Kristina Sawyckyj is an intern and also is from Colorado Springs and working with the Colorado Springs group. She is also a veteran and represents veteran issues.
Leslie Taylor is the lead rural advocate. She has had many successes in her individual advocacy cases. She said that in rural Colorado it is difficult to organize due to retaliation. She got on 2 governors committees –mental health and judicial performance committee
Anne Marie Martin is our housing advocate. Her mission to assist people with disabilities who encounter barriers when they cannot get help from primary resources, would like to have more people involved, priorities include development of a streamlined intake to determine which cases CCDC can take and in what capacity, she also wants to develop and maintain relationships with key people at HUD, Civil Rights and housing authorities; develop a training module for CCDC and others including housing authorities and landlords, identify key documents on CIL and create reasonable accommodation forms.
She mentioned that getting local housing authorities to create a disability preference is a good organizing issue.
Steve Teets is from Greeley and the group is WAND. They accomplished two things, dealing with county and city to get grievance process implemented for transportation and they had candidate forum via ice cream social to get candidate positions on transportation and other disability issues. He also is on citizen bus improvement committee. He has concerns about CCB trying to control and intimidate people
Jaime Lewis is our operations manager and has a goal to get database updated. We need to go through 2000 people and get correct mailing information, phone numbers and email addresses. He is proud of the youth program and discussed the poster program. They have graphic artist designers’ work with the teens to make disability posters. We will be marketing them. He also serves on the CDOT advisory where they gave grants of $120,000 for coordinating councils on transportation
WE NEED TO SEND OUT THE LIST OF LOCAL COORDINATING COUNCIL and WHAT GRANTS WERE GIVEN OUT RECENTLY
Lori Chevron is from WAND and CCDC in Greeley. She said that they recently had election for city council and they will be meeting with the new city council people and also new mayor in Greeley (not pro transit) recent transportation issues.
Rob Sirowitz is a volunteer in the office.
Dick Lodmell: Statewide Organizer-he said that he works mostly in rural areas and need to recruit in Montrose, Grand Junction, and Cortez. He said La Junta likely going away as a group and that Denver is not working well. Greeley going well and Sterling and Fort Morgan are going great, and Colorado Springs is picking up –
David Moran –he is new and became disabled a year and a half ago lives in Steamboat Springs----connected with Mark and Mark connected with us— he lives in place that is for seniors and has seen a lot of injustice –bad circumstances lots of discrimination -----
Other participants that came later included Hope Krause and Dan Shields from Morgan County; Kristina Sawyckyj and James and Undray Tucker from Colorado Springs; Kristin Castor and George O’Brian from Pueblo.
LEGISISALTIVE REPORT: BY SHERYLE HUTTER:
We followed more than 50 bills directly, very successful legislative experience because the communication to legislators from membership has been good. We can collaborate with some groups but will stop when needed or if the group violates any of our principles. Input and involvement is very important. Sheryle acknowledged Lolita Santiago who came to the Capitol to shadow her and offered members that anytime someone wants to be there to shadow they are welcome
In terms of bills highlights were the “Nothing about us without us” bill that gives us more opportunity to be on boards and commissions. People need to continue to apply through Julie. We have gotten a lot of people on various boards but have more to fill. They are beginning to learn that they need to involve us up front. We also supported the Alternative therapy bill, the deaf interpreter bill, voting bills, health care reform. We also blocked bad bills as always including a photo id for controlled substances, and drivers’ license competency. There will be at least 100 bills from interim committees.
CCDC Funding: Emily VonSwearingen
Emily gave a brief overview of the kinds of fund raising activities she is creating as summarized in the handout. It is especially important that members let her know when they receive donations because she needs to enter it into the database and send out a receipt on CCDC stationery.
The website now has a logo and an opportunity for member groups to send in blogs. Staff will monitor and edit material for consistency with our mission. There was discussion about this and any monitoring is not for the purpose of silencing dissent but from stopping people from representing an opinion that is not one of CCDC. We also cannot have links to any inaccessible web pages.
Consumer Directed Attendant Services and Supports:
Based on concerns and problems associated with the transition CCDC asked the new Colorado coordinator for the new fiscal intermediary to come to our meeting. As members may recall, at the last state meeting CCDC was asked to make the state get rid of Accent, our past intermediary. CCDC made the case that based on payroll problems, lack of statements, etc., and were sufficient for HCPF to rebid the contract. We do not know why the new company was selected but have heard that they have replaced Accent in several states. We also think that many of the problems may be linked to the state rather than this new company but do think some problems are related to the company. Karen Brouillette was introduced:
CDASS Consumer directed attendant support services are a Medicaid service delivery option that allows people eligible for care in the home to direct their own care. Medicaid pays through a fiscal agent. The first agency Medicaid hired was Accent. It not only manages the paperwork, but also the training. The program has been very popular, but problems with accent were so serious that CCDC demanded a change. Medicaid agreed to replace Accent as the fiscal agent for CDASS. The decision was made very quickly, but the process has been slow. The bid took a long time and by the time the winner was announced the transition had to be very fast, which is always a bad way to do a transition. Public Process Limited starts in two weeks under the direction of Karen Brouillette.
The parent company is Public Consulting Group, founded by Robert Wood Johnson to support consumer direction PPL is a subsidiary founded by Mark Fenton, one of the original PCG members. PPL has 15 other consumer directed programs, but ours runs differently. In other states, the consumer has an EIN with the federal government and hires directly. They contract for the paperwork. PPL is the employer of record here and consumers are managers/supervisors.
QUESTIONS:
Anne Marie: Why would you ask the clients to waive legal rights in the first place? She was referring to a clause in the contract that required clients and aides to waive rights far beyond what is reasonable for employees. CCDC attorneys addressed this and PPL did agree to change the contract but the question remains why and how that was not caught by someone else. She also requested an organizational chart and copy of the contract. She stated that like many people she needs a specific person talk to in order to be sure all the paperwork is in order. Also wants the link for the teleconferences.
Karen’s response:
The contract has not been signed by all parties yet, and a copy of the contract is only available from the state after December 1, 2009.
The Colorado office is in temporary quarters. There are 2 local customer service representatives and there will be more. There are 3 financial operation specialists to process payroll and timesheets. The secondary unit is in Chelsea. There are two support brokers/trainers (they are looking for a better word) and there will be 2 more coming. There is a supervisor for them. There is a supervisor for the customer service and financial staff. All are under Karen, with back up in Arizona and the main office is in Boston.
Where can people go now for help? The customer support line. But there’s no feedback to follow up on where something is in process. The trainer/support person will have a case load. The title can be changed.
Kevin will get a copy of the contract. Kevin has sent a letter with 11 questions and answers will be posted on the web sites.
Leslie Taylor: I need a phone number to call and was told that I couldn’t have one to return a call from one of your employees. Answer was that the field reps will be out in the field and not available. CCDC MEMBERS MADE IT CLEAR THAT THIS IS NOT ACCEPTABLE—WE CANNOT ONLY RECEIVE CALLS BUT MUST BE ABLE TO RETURN CALLS AT A TIME THAT WORKS FOR US.
Leslie also asked: Where is the time to fill the forms coming from? Are you paying us? Why don’t you have Spanish? Karen said that they are coming up with a Spanish form. Cesar offered to translate. Julie reiterated that it is very important to have a number to call for many reasons.
Julie asked PPL to identify out of our problem areas what is required by whom so that we can discern what is PPL policy and what is a legal requirement. Some of this may be coming from Medicaid, like the time sheet.
George: What can we do about the gender bias of the program? He was really referring to the many things that attendants need to do that are not on the time sheet such as changing a furnace filter. He said that the tasks on the agreement are considered “women’s work” and that as a male head of household he needed attendants to also do the kind of work he would be responsible for such as the example above. Karen agreed that many tasks were not acknowledged on the paperwork.
Kristina Sawyckyj said that she and many others need everything on disc or on the web site to process due to a brain injury.
There was no answer to this issue.
Someone else asked how are you going to promote the program and what is your grievance process?
Karen’s response was: We do plan on having an outreach program. How do we get the word out? There are 1,000 clients and 3,500 attendants. We don’t have a grievance policy now, but will get it.
Someone asked if we can offer health insurance to attendants. It is not in the scope of the agreement. We do have Karen Graves from Accent working on the email part. There needs to be good customer service.
Other items of discussion included:
The applications and paperwork must be mailed in a timely manner.
OLTC doesn’t refer to CDASS in many areas and case managers do not like the program, all of these problems make them dislike the program more.
Not everyone has Internet.
What protection is there for clients with protected health information? One suggestion from a member who could not be here was that clients have a password that only the clients know so that aides cannot call and get information about clients, particularly aides that might be disgruntled. Under Accent employees have gotten information about clients and this is a violation of privacy.
Kristina asked about compatibility with screen readers. Karen will ask and get back to us.
Leslie asked about getting the paper time sheets simplified, like the Accent time sheets. Karen said that all other sheets are time in time out in other states and that the Colorado sheets are less involved. We need to work on them. This was not an acceptable answer to the group as there is massive confusion about how to do the time sheets. Julie reminded people who need reasonable accommodations such as large print to make that request in writing on an individual basis.
It was suggested that when PPL does a mailing they should ask for preferred formats for reasonable accommodation. This is because so many people will need this due to the time sheet format.
If the state is looking for some kind of problem by having the time broken down and having many different time sheets per worker what is the problem? What is the state looking for in accounting for fiscal spending? The former sheets were a single block of time, broken into categories. If someone was over spending does the state think this is in particular areas?
We need to know when we are over our allocation. Medicaid wants this to be timely. It should be by the 15th for mail people, online.
Someone asked Karen what are some of the most exciting things you have done. She said that the real time reporting will be good and the local staff with education and training will be dynamic. We will be working with peer trainers. She assured us that a problematic Accent employee will not be working at PPL.
Leslie asked about the standard and differential rates for workers. The answer is that one can define two rates for employees for service. Say 18 is normal, 22 might be for 5 am. Indicate it and PPL will pay it. You can use it anytime. If you want to change the rates, it requires advance notice
The session ended with CCDC stating that they will try to divide the issues into what are Medicaid and what are PPL and will continue to work with both HCPF and PPL on remedies. Karen will get back to us on our questions and she will receive a copy of these notes.
Center for Rights of Parents with Disabilities –Report from Carrie Lucas:
She started contracting with Denver Juvenile Court for cases. We are now getting more cases. Denver and Arapahoe has the most child protection cases. Carrie can’t pick up many other dependency and neglect cases unless they are severe and it is very clear that there is discrimination going on. This is often in mental health. Carrie does not take child custody modification because they rarely involve disability and do not lend to systems change. She answered questions from the group.
Legal Program: Kevin Williams
Briana has put together an intake form to track responses. There have been 114 contacts. He talked about what information he needs and how advocates should present cases to the legal program for consideration. Advocates should give the legal program as much background as possible. Do the footwork, writhe the letters, make the calls. If someone has requested accommodation and has written (email is fine) and called and then not gotten a response, call Kevin.
Be sure someone has a disability. In a legal arena, they must meet the legal definition under the ADA to qualify. Get the medical records and the correspondence. Random emails will be deleted. Rambling and long emails will be deleted. Companion animals must serve a purpose documented by a doctor. Amy suggested putting this in a form on the website. Kevin will do this.
Kevin discussed the ADA Restoration Act that amended the definition of disability. The ADA was amended to take into consideration that if a person uses devices, it means that person does have a disability. Kevin said most of our cases involve substantial disabilities so it hasn’t been a problem but has come up in some cases.
Joe said medical marijuana and the definition of caregiver have impacts for us. In the medical marijuana world caregiver means someone that provides the marijuana. There was a long discussion about medical marijuana and inaccessible dispensaries.
In housing cases there can be no other violation of the lease.
The good news is that the Department of Justice attorneys contacted Kevin to discuss Olmstead cases.
In all civil rights laws the stronger law prevails, whether it is state or federal.
Kevin and Mark have been working with Jerry Frangas to work on strengthening the Civil Rights Act of Colorado so that there can be attorneys’ fees. Without the ability to recover attorney fees no one can afford to take on violators.
Mark said that he is also working on a parking bill: Major revisions: identifying people who obtain the tags fraudulently. There are more tags than the census identifies. Paul Woodward’s’ dog got tags. Raise fines from 100 to 350 to park illegally, and an additional fine for improper tag (this would take care of CSU) Class one misdemeanor class 5 felony to go to education. Might let individuals make sworn affidavits
In Colorado Springs—fines go into general fund. This bill will split funds and have some funds go to education local communities about enforcement.
James Tucker said that the Civil rights division is useless and does not seem to have adequate enforcement power. Kevin said that he has written to Steve Chavez because we saw several cases where state civil rights found no cause and dismissed cases when there were clear violations of fair housing law. He got no response.
Other comments: Leslie said that we also need a bill to control the Single Entry Point System. Amy discussed the Denver handicapped parking enforcement program (there is one in Pueblo also) where people can pair up and get training and deputized to write tickets.
Kevin concluded by making a plea for monitors and testers. He agreed to compile a list to go out to members and leaders about places that need monitoring.
Internal Operations/Technology Report by Christina Worner, Technology Coordinator and Executive Assistant:
Data Management: Two database systems
One data base for individual advocacy cases and client data and all advocates use this data base and it is called CIL Suite. The other one is called Sales Force: This is a Non profit shell on a sales data base to track members, donations, fundraising. We can’t combine them. They are online and secure. Challenge is that CCDC does things differently from any template data base. Founder of CIL Suite has expressed interest in how we are using the data base. This might open the doors for other organizations.
Sales Force is expensive but we got it donated and have been trying to update it and collect as much information as possible on members so we have that to use for policy purposes. We are also tracking when people pay membership dues so we have a way to do automatic membership renewals sent out when their year expires. We have just started to implement sending membership cards.
We have a new and accessible website with Drupal, which is a content managing system. We had to make it accessible. That means more web sites will be accessible. Now we are putting the content up on the website. At first there will only be a few people who have access to post content and then we will grow it out to more members. Let us know of any gaps and send us content you want on the web site. Christina will refer to Kevin and Julie for content management. It was asked if we can we get a mailing list from the site. No, but we should be able to get it from Salesforce. Christina needs help with data entry. We also want our database to record people’s interest and expertise so we can easily find specialists in areas like service animals, housing, and home modification as we grow. Requests for information from these data bases should go to Julie.
Leslie says phishing is a problem with web pages. Do we have protections for clients on Cil Suite? YES. Mailing lists from Cil Suite can be batched.
There was a discussion on how to track membership and who has paid.
There was not time for the annual goals report from Julie Reiskin but she will send the written report out with the notes.
November 17, 2009 Meeting Notes
Board Meeting:
As we have done in the past we had a joint board/membership meeting: Joe Beaver called the meeting to order. He asked that board and members exchange expectations. The board has changed orientation as CCDC has grown. When Joe was first brought on board, it was to form policy and now the primary purpose is fundraising. We adhere to our mission and will use any means necessary to achieve it. Joe asked board members present to introduce themselves and to share their interest and perspective.
Sheryle Hutter, Vice President and mother of two adult sons who have disabilities. She appreciates the credibility that CCDC has. There is also a lot of support among members. Our phone calls and contacts with legislators are important. Julie added that advocacy organizations require that both the board and the director be strong advocates. Both will receive pressure from people and organizations, including donors, who complain when advocacy confronts their interests. Julie said that as a director she appreciates that the board always backs her in backing up the advocates and has never wavered at all on mission.
Henry Grater said he has served on boards before and joined CCDC to make a difference. He has been on the board for about 4 years. He believes in the mission. He also sits on boards for early childhood and empowering parents. He represents rural Colorado and also has life experience in issues that CCDC deals with such as raising children as a single father with a label of a serious mental illness.
J C Lodge said that he was persuaded to join about 14 years ago and appreciates the feed back at this meeting. He says this state meeting and how we involve people in decision making is what makes CCDC different and his favorite part of CCDC. He talked about the tension between running a provider agency that contracts with the State and serving on boards like this but feels the communication is important.
Gary Van Dorn is not able to be present and is our Secretary.
Barry Rosenberg has retired from CCDC and PASCO. His partner, Laura Gilbert has applied to serve on the board.
Robin Bolduc joined the board because their children have disabilities. She worked with UCP and established a good relationship with many parents and has kept most of these relationships. She wants to focus on what is important to members.
Joe then asked the people present who had applied to serve on the board to make a statement to members:
James Tucker wants to apply out of respect for Julie. He has been active in Civil Rights. He is a Gulf War Veteran and has Gulf War Syndrome and other disabilities and also is a parent of an adult with developmental disabilities.
Kristina Sawyckyj also has gulf war syndrome and brain injury and wants to serve on the board because she wants justice for people fighting for their rights.
De Voe Mack has a spinal cord injury. He arrived on the Underground Railroad from Memphis Tennessee to hook up with PASCO and get out of a nursing home (4 year stay). Now he is a real estate broker and has started Second Chances to get people out of nursing homes and also helps people transition into accessible housing.
OTHER MEMBERS COMMENTS AND INTRODUCTIONS:
Dan Shields discussed how he served on United Way board for several years, but quit because it wasn’t doing much. He learned of Julie through a friend and called CCDC for help and got put in contact with Hope and Elizabeth. Has 41 years of experience with carpentry and wants to specialize in home mod and helping people get it for the right price.
Joe explained that the board started out as a policy board. At this point, the board needs to support the organization with funds. It started with 80,000 and now has a budget of half a million. Joe has researched what boards do and has discovered the weakness is in fundraising.
Leslie asked if the board would consider having SSA clients pay when their cases settle, in effect letting our advocates charge like attorneys do and take a percentage of the cases? This has been discussed before and while we want to help people do applications properly the first time and avoid an appeal, we do get clients after the fact. Some clients cannot afford to pay even out of their back pay but some can. Leslie has secured over $75,000 for clients this year and the clients she helped did not even make a donation. Julie said SSA has changed the rules and you now have to pay $1000.00 and pass a test in order to be recognized and get those funds. We are trying to get applications assistance so that it doesn’t go to appeals. Leslie wins cases and asks that the money be donated, but clients don’t, so she wants a way to make it work. We decided that if we can find the $1000 we will pilot the idea with Leslie being the first advocate to get certified to do these cases. Leslie agreed to help try to find the money for the social security testing process. If this works we can invest in more advocates.
Joe said there is a proposal from Chris Romer to define a caregiver under medical marijuana as someone who does more than provide medicine. Julie suggested dispensaries could be signed up for corporate membership. We would then advocate for other supportive services related to disabilities.
Medicaid: Dr. Sandeep Wadhwa, State Medicaid Director: Julie introduced Sandeep as one of our allies who has been very responsive and open to us. He came with a presentation but our questions prevailed and he was not able to give it. The presentation is included as an attachment with the minutes.
Dr. Wadhwa has been with Medicaid for 18 months. Joan Henneberry is the Executive Director of Health Care Policy and Financing. Dr. Wadhwa is specifically director of Medicaid. He is also a doctor and a geriatrician. He promotes functioning and overall health, not just sick care. Medicine is basically about diagnosing and treating sickness. The orientation of supporting health and functioning is different. Medicaid pays 4 billion to providers, but it is the consumers they are supposed to serve. Providers are only partners. He has told them that their lobbying is for their economic self interest and he needs access to client representatives and advocates and holds the model of CCDC out to others such as those supposed to represent children and seniors. 40 % of the clients are Hispanic and there is no client group representing them. Julie said that there is a collaborative starting that is looking at Latino Wellness and that this might be a group to represent Latino interests as it is diverse. Julie recommended a vendor/contractor model rather than a partnership with providers as they do not act like people that have to follow rules and procedures. Sandeep said that 270 people manage 4 billion dollars and must become experts in contract management. Medicaid seems to attract policy people and needs more contract managers who will focus on deliverables. This does not seem to be a skill the state as a whole excels at.
Kristina said that one area that she sees a great deal of waste and inefficiency is the school based Medicaid programs. She said District 11 spent $25,000 on should have been a $5000 expense because they didn’t know how to interface with Medicaid.
Anne Marie asked why provider contracts did not have clauses for liquidated damages. Sandeep said that there are tools within government for holding agencies accountable. He is working on having things in place by July 2010. Some agencies you will have a public performance review. The legislature and Governor are supportive of competitive procurements. He also said that he was concerned because the advances in the Eligibility Modernization feels like it is mostly focused on healthy low income children, not on adults with disabilities or the elderly. (This is accurate) He also mentioned that there are audit committee findings that need to be addressed in long term care.
He said that the goal is to remove barriers to health and functioning without then cutting out the support. He will work with Julie on the definition of self sufficiency so that it is not punitive. He agrees that providing services in the most integrated, least restrictive environment is important. He does not like to see clients represented as dollars, but this is tricky because dollars are involved. He wants to move to a client centered model of care that is accountable to taxpayers.
He said that we spend a lot of time collecting data on activities of daily living and tools of daily living, but Long term care, behavioral (mental health) care and health care are three different categories that somehow have to be incorporated.
Sheryle Hutter said that the focus is on non-disabled Medicaid, but disabled should come first. She said that terminology can make all the difference in the world. The commonly used words have different meanings to all of the players involved.
Brent Belisle works with the Community Transition Services benefit. This is a benefit for clients to get services to get out of nursing facilities and into the elderly blind and disabled (EBD) waiver. About half his clients have physical disabilities and the other half have psychiatric disabilities. The EBD waiver works for the physically disabled. But CTS isn’t a service in the Mental Illness waiver. They need housekeeping, med monitoring, shopping and are denied because they can dress and feed themselves. Dr. Wadhwa wants to know why they don’t qualify for the MI waiver. There is a perception that if you don’t need hands on care, you are not qualified. The cognitive supports do not get equal weight. Julie pointed out that staff was interpreting the rules incorrectly because the programs were set up that if you need help getting up and out of the house; it shouldn’t matter if it is physical or mental/cognitive.
Dr. Wadhwa said that they want stakeholder involvement in our policy development and that HCPF needs to be more involved in housing.
George O’Brian said that he received a good electric wheelchair from Medicaid. But he was told because he does not fall as often that he may lose all eligibility and services. This is an example of bad public policy and people should not be penalized because they have increased function that they got from receipt of Medicaid services. If someone like George lost eligibility his function would deteriorate and he would be right back where he started.
Dr. Wadhwa said that there seems to be a conflict between eligibility and care planning and that this is not the intent.
Anne Marie shared how she fought long legal battles for DME that her doctors and therapists recommended and Medicaid officials simply denied. These people do not have the medical background to make these decisions. She was told that because she looked good and communicated well, she wasn’t eligible.
Robin said that there seems to be an ingrained perception that we are out to cheat the system—like we are going to sell a wheelchair. She said that the system does not realize that when we ask for something we need it and items like DME saves in secondary disability. She said that it took six months of appeals to buy a vest that kept Bruce’s (her husband) lungs clear. It was discussed that in long term care, you have elderly with dementia, young disabled (physical and mental and chronic illness), and people with developmental disabilities. While their needs intersect, they have different needs. There have been studies about giving quads everything they need and they saved hundreds of thousands of dollars. This is the study that was the model for the CAHI program.
Some of what is happening is that you can’t measure an illness that is avoided.
How we define medical necessity is very vague and seems to result in litigation. The ambiguity is not necessary. Julie said this is about the benefits collaborative. Sandeep said that Christy Hunter has been asked to work on definitions for appeals to facilitate resolution. There are two organizations making decisions on medical necessity (ACS and Colorado foundation for medical care or CFMC) and it is confusing why. It’s not clear they have the professional staffing or that they understand the equipment and populations to make the decisions. They also deny for silly reasons like if the provider makes a minor error on a form. Instead of calling the provider they just deny.
JC said many of these problems in long term care stem from how the department implemented the new screening tool called the ULTC (Uniform Long term care) 100.2. The goal was to create a care planning system where when the case manager did the assessment they would have a service plan, not just eligibility. They also did not finish training the single entry point agencies. He said that we weren’t complete with it. We were developing a service plan. The IADLS (instrumental activities of daily living) were supposed to feed the ADLS (activities of daily living) and they were all to be integrated into the care plan. We came up with cultural change training and we trained one third of the SEPs and it was dropped. He said that they (SEP agencies) were told to cut back and implement Medicaid cuts across the board but clients were told that only personal care and homemaker services were to be cut. It is a serious problem when providers and clients are told two different things. He also said that the proposed changed interpretation to the tool was a problem. He said the tool was created to asses without looking at if someone had equipment (assess without regard to use of equipment) because we wanted decisions made without it to avoid the improvement piece (discussed above where clients would be punished for improved health and function).
Steve Teets said that some get too much care, some get not enough or not in some areas, and others get nothing because they are on a waiting list.
Dan Shields said that HCPF and the contractors like SEP agencies should put some of us in the office working.
Sandeep asked what about DD and MH and that he wants to have input –he asked where to get this input and everyone said that CCDC is the best place to get that input because we are cross disability. We will forward some cases of people with these disabilities that have given feedback to HCPF and had that feedback ignored. Julie and others said that the retaliation is formidable.
Mark Simon said that the underlying issues are ethical. There needs to be a code of ethics that everybody has to live by. There needs to be a customer service policy with teeth. He said that under Governor Romer, a state person could be reprimanded for three complaints of rudeness in 6 months.
Julie said that we need to be able to assure that anyone who cooperates with this has to be assured of no retaliation. Sandeep said that he would follow up on how to do this without retaliation. He said “I want to hear from the populations that don’t give much feedback.” CCDC members asked for a letter of response since we asked so many questions and he was not able to give responses to everything.
Sandeep wanted to talk about two issues: the budget and the Medicaid buy in:
Federal Stimulus package---we had to budget for 2010-2011 as it is now with the enhanced federal money going away in December of 2010. If that happens there will be more deep cuts. We need to get Congress to not cut the enhanced funding all at once. CCDC members agreed to work to oppose cuts, and we will also ask that the conditions of no reduced eligibility remain. We will get every Colorado congressperson behind it as it is necessary to avoid further cuts.
Phase 2 of Medicaid Buy in will be February and March. Sandeep said that they are also working on primary care physician relationships for clients with complex needs. He said that there are some thoughts with the Family Physicians and we are talking about doing some training. Internists have not engaged. Anne Marie asked if the key is reimbursement rate. Sandeep said it is 90% of Medicare rate. We need to keep Medicaid patients as a percentage of their practice—not their whole practice. James said that the biggest complaint of doctors is the paperwork involved.
We had well extended out time with Sandeep so we compiled this list of questions and issues that will be sent to Sandeep for a written response:
These are questions and suggestions:
1. For cost issues, perhaps we could have a forum on ways to save with real live examples. We have given input on BHOs. Julie pointed out this was before Sandeep was on board. Julie will compile a list of all of the input we have given within this administration.
2. Amy suggested an anonymous tip program? Julie: it’s really hard to respond without identifying information. We have tried Secret Shopper programs, but there are problems. This is not a reason not to do this but to advocate for figuring out a way around it, like giving dummy id numbers.
3. George suggested that we or the state do an excel spreadsheet showing cost and then cost saved or perceived savings. Julie at one time took a sampling of clients and showed how doing things our way would save money. Maybe we should do this again, perhaps having each group take a few examples from each area and show it.
4. Sheryle wants to know if can we give documentation and withhold the names. We’ve done it, but in rural areas people can still be identified. It has to be in the aggregate. We have a draft brochure on retaliation, followed by a page on the website so it can be reported. We will also post stories from people who have gone through it and survived. Part of the problem is the way the state investigates it. They go to the instigator. Could we convene a committee to help the department develop an ethics policy and a customer service policy?
5. If we cannot remove the asset test we should increase it, we need to be able to at least save enough to manage home repairs, emergencies, etc.
6. What is his preferred method of communication and how will we be responded to
7. Forms for independent contractors –impossible to track and figure out what you are supposed to do
8. Home modification—Dan’s idea
9. Hopes ideas
10.Brent: But every 4 to 8 years, we get a new administration. This is a fact of life and we have to do this over every 4-8 years.
11.Joe: Income determination should change so people can work. Buy in is looking at this.
12.Anne Marie wants to know who is interested in housing at HCPF. There was another mention of this is a different meeting.
13.In the DD system they do not have CDASS and Independent Contractors in the Supported Living Services program have to fill out a huge number of papers and they are not easily accessible. They will not give out good information.
14.David said that we are talking about defining self sufficiency—this is at many levels and there are so many facets that we really need to be involved and aware of other needs.
15.Why is CTS so poorly implemented? (This seems to be a pattern with disability related services.)
16.Denial of therapies due to not progressing or maintaining
17.Not taking away services because someone becomes more functional
18.Follow up with school Medicaid
It was discussed that we have a gubernatorial election coming up and we need people on both sides. Candidate’s forums need to be organized.
Medical Marijuana Discussion:
Do we want to make an initiative to do advocacy for qualified applicants to get marijuana? People with disabilities know what they want and need and should be able to get it even if it is alternative care or medical marijuana. One of the issues is increasing bias against controlled substances. They charge that we sell it. Sometimes people are prescribed large amounts of drugs without justification because doctors don’t want to do the evaluation for the cause so we have to do work around pain management.
COMMENTS:
Steve: There should be stricter eligibility.
Amy: We need to verify that people do have a disability and have a legitimate concern. Leslie is OK with using ADA.
Leslie: Stop using the word caretaker.
Joe: Use the ADA to help members, don’t advocate for the dispensary. Julie: If we have dispensaries join as organizational members they can choose from a menu of services that we offer to others. We would have to make the services and number commensurate with what they spend.
What do we do when dispensaries ask for more services than we offer—such as referrals? One distributed literature aggressively at our awards ceremony without paying the price. One of the dispensaries told someone he didn’t need his psych meds anymore and he went psychotic. Mark said that there is also an opportunity for people to adulterate the substance, raise the rates, and threaten clients with compliance. We need to make it clear they will not get special dispensation if there are complaints against dispensaries.
George: pilot or sunset programs.
Rob Corry is an attorney on contracts and it might be good to involve him. It might also help to have doctors involved on some level.
Steve: Wait until the regulations actually come up.
Julie: We should have a role in drafting it.
Christina: It can be taxed
Joe: There is a 90.00 Fee and they have been paying taxes from the beginning.
Carrie: The issue is not municipalities, but that state can collect. It is not prescribed, but recommended by a doctor so it is more like an over the counter drug.
Our position must be to serve members, define the relationship between the person who gets the drug for the client and what the oversight is. Home health agencies and even the fiscal agent for CDASS do drug testing. What happens if one of our workers has occupational exposure?
George asked not to be part of the discussion because of a professional conflict as he is licensed as a substance abuse counselor.
Robin: We need a broad statement about access to narcotics and alternative therapies and a list of narcotics we can support. Our job is to discuss to what extent it needs to be regulated for safety, but not regulate it ourselves. Julie will draft a policy statement for members to review—Kevin will review it also.
Mark: Make a statement saying we object to anyone who attempts to misuse or abuse the programs that serve our population for their own benefit or gain. Such abuse makes it more difficult for people who have a legitimate use.
ADAAG Guidelines must apply to dispensaries. Kevin said they can set up in inaccessible dispensaries in some cases by renting in older buildings. They still need to provide reasonable accommodations even if have not installed an elevator. Julie said to address individual problem dispensaries we need address, owner, situation, etc. so we can respond. Most of them have done extensive remodeling and this might make them liable for more access. We need people to get the name, date, place, remodeling details, etc.
David: What have other states done? Are there other groups like ours? What happened to them? Julie will check out if other state disability organizations have addressed this. Someone asked what stance has ADAPT taken. Joe will ask.
Is there a professional association? Carrie said that there are efforts to create one, but the out of state groups are against it. Someone asked if it violated HIPPA to require applications are notarized? It is under Department of Health, so HIPPA doesn’t apply. Carrie said it is about proving the identity of the applicant. Leslie said if there is any problem, the application is rejected and the fee is kept.
David asked if there an ID that goes with this. Julie: No
Julie will draft a policy for review.
IDENTIFICATION OF PEOPLE WITH DISABILITIES
There was a brief discussion of identification of people with disabilities. People do not want to be labeled, but people will also take advantage of the parking, DME and other services to get them fraudulently.
Mark said that we have a problem because there are 350,000 people with all manner of disabilities in Colorado according to the census. However there are 1.2 million blue placards and 45,000 hard plates. We don’t know about the number of disabled veterans plates.
Kevin has many members who want to identify their disabilities to get around some legal problems such as who gets to buy accessible seats at theaters and sporting arenas.
THIS REMAINS A CONTROVERSIAL TOPIC ON WHICH THERE IS NO CONSENSUS IN THE COMMUNITY—IDENTIFICATION OF PEOPLE WITH DISABILITIES MAY BE AN EMERGING ISSUE.
Kristen: This has come out in the arena of emergency preparation. There is a way to post “I need help OR I’m OK” in emergencies. This should be available to the general public.
Review Programs and Vote on continuation
Legal Program: keep and expand if possible
Center for the Rights of Parents with disabilities: keep
Statewide Organizing: Continue
Steve asked how do we strengthen old groups and get new groups
Julie said for training up to five people are needed and then we will provide training and require the group to set goals. It works best at half a day a week for six weeks. In rural areas there are two one and half days. Amy; some schools have transition programs we could guest lecture at. While we want advocates to be active members of groups we really need each area to have both a lead advocate AND a lead organizer.
David suggested that we develop a packet of press releases with photographs to schools or to other organizations. Service clubs will help you do fundraising. Develop a media toolbox. David will volunteer for this. He has a recording studio. There was a discussion of assistive technology. Also a suggestion to use the colleges as recruiting places.
Individual Advocacy yes continue program
Youth program yes we should continue to work with youth but focus more on college age than high school for advocates but continue to work with high school students to plant the seed.
The group also approved special events for the 20th year anniversary and 20 years of the ADA. Plans include support of a memorial wall and special garden at the Botanical gardens. The biennial of the nations will also take place involving south and Central America. Also community appreciation luncheon with Henry Claypool where we will partner with other groups and invite those that have supported disability rights such as funders, legislators, judges, others to say thank you. Also some memorializing at the capitol—the two lifts will be Dan Davidson and Scott McVey.
We will also do our annual Awards fundraiser in the spring.
The group approved working on an application assistance program with other organizations, and continuing to work on making CAHI operational.
David said that there is good fundraising in Yampa Valley.
We discussed if we could do a disabled artist art show where people could sell their art. Could we do it through the web page? What’s a fair take for CCDC? Could it be administered easily? We can’t do the shipping etc. but EBay has a nonprofit section, so all we have to do is teach people to do it. We could link it. David explained he had a client with a coloring book and got sponsors to print it for the lodges to sell and everyone got advertising and they raised money doing this.
Web page: We need each group leader to let us know when your meetings are by the first of the month. We also need reports on what you are doing.
2010 GOALS in addition to continuing the programs:
Overriding issues:
Client control of resources—money follows the person
Retaliation
Accountability
Noting about us without us
November 18th: Meeting Notes
Policy Discussions:
Budget
When cuts are necessary, we need a voice and will draw a line only when there are life and death issues.
Kristen suggested a budget forum where we would make recommendations to save money—DME is an area. Julie said we could organize a white paper with a presentation. This will be a goal for 2010.
Amy said that the resource management at the state level also needs to be addressed. Julie asked if we should bring up the issue of why don’t state employees get the Medicaid travel rate and paid leave at the private sector level? Yes, people want this brought up.
Julie shared that there was already a meeting with the chief of staff of the Senate president who asked about our bottom line in terms of cuts. Julie summarized this and asked if this was an accurate reflection of our membership views:
#1. We will not tolerate cuts to AND, direct care salary and hours, DME and supplies beyond what people ask for, access to medication (increasing meds that need PARS not acceptable) we oppose ending the moratorium on psychiatric and anti-seizure meds
#2 Reduce skilled nursing and therapies associated with Home Health because they are not direct care. Mental Health Care should be focused on mental illness, not merely adjustment. Qualifications for care need to increase.
Yes these are reflective of our membership views with the following additions:
1. Care plans have goals, but no one is assigned to help a person meet their goals.
2. Leslie mentioned that rural mental health centers should not be doing diagnoses and treatment for complex patients when they do not have qualified staff to do so.
3. It was suggested that we should look at fee for service at Children’s Health Plan. We should increase the annual payment to $50 and there should be a payment made for each child on the program. If you have more children you should pay more. We support reasonable co-payments if people know in advance and if they are affordable. We know that co payments for children and pregnant women are not allowed in Medicaid and think that this should change.
4. Eliminate the CCAR reporting form for mental health.
5. Consumer direction needs to be implemented.
6. We need one place people can call to report problems.
7. Medical and non medical transportation distinctions are resulting in waste. Clients who cannot get transportation should ask for a reasonable modification to get their allotment increased so that CDASS attendants are paid for driving. The county must pay for mileage. We know one provider County Express charges different rates for medical and non medical transportation and charges based on who the payer is and that is a problem.
8. School Medicaid is wasteful, but it is federal, so the state is not responsive.
COMMON GROUND PLATFORM:
Last year we asked for something all disability organizations could agree on along with other allies to extend our outreach—Julie did a draft which was passed out and is attached. People should comment on this when they comment on other items.
George, David and Leslie talked about using media and advertising for outreach and funding.
MEDIA POLICY DISCUSSION:
How can we control our output so that our message is aligned with our mission without stifling dissent from within?
We need to put our policy positions on the web site and direct people who want to know the official CCDC policy to the web site.
David suggested that we design templates and shells for specific things like PSAs, photo releases, etc. He suggested that we should also have an approved list of events. We should also begin to post FAQs. Christina says downloading these forms need to be controlled because we can’t have fundraisers with people we are suing. Amy suggested a password protected area. This might be on CIL, or put it as a teaser to encourage membership. You can ask questions about why you want to be a member. Comments posted might be for members only. Christina said that issues can be discussed on the blog. There is also content management involved which involves programming. Julie said these ideas need to be prioritized because Christina can’t do it all. Amy said the CIS office does this as interns. Christina is working with universities on internship posting.
Emerging Issues
Lack of control in SEPS and CCBs (includes ULTC). Leslie said there should be a set of standards like the APA has for workers. Dan recalled Mark’s ethics standards.
Laws must have enforcement—there need to be penalties for violations of laws that protect us like the anti retaliation law.
Support other civil rights organizations even if there are issues not involving disabilities: Julie shared the following story:
Civilian employee at Fort Carson asked to do task outside his job description, injured, filed workers comp, returned with restrictions, and was threatened with a noose when he asked for accommodations. The question was should be get involved and support this man. The consensus was that yes we must—the fear and revulsion has taken a new turn
Steve asked that we develop issue committees for topics such as veterans that could meet by conference calls. Ideas for committees included veterans, emergency preparation, and assistive technology. Any committee should report monthly and Joe needs committee reports in the board meetings.
WE SET AN IMPROVEMENT GOAL FOR EACH CCDC PROGRAM AREA:
Individual Advocacy—Create web based training
Legislative—Connect every legislator with an advocate: Julie will send out a chart to fill in the blanks
Policy—Increase our numbers on boards and commissions and make sure that representatives report back. Marilyn Davis will help track this.
Youth Recruit at college level
Leslie: What is our relationship with Laura Hershey/ she has a large following in her website. Can we ask if we can link with her website? Yes, Julie will ask and Laura is a long time CCDC member.
Amy: Advocate exchange-create a list of which advocates have which skill sets. We need someone to keep this updated as that has been a problem in the past.
Leslie: Reports on Legal Services Board—Julie will make reports as part of her monthly reports.
Create a bulletin board for sale items on web site.
We will develop a committee structure and begin issue committees on
ü Veterans
ü Mental health
ü CDASS
ü Media/outreach
ü Emergency preparedness
ü Assistive technology
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Individual Goals-each leader and member should add their own and if they send it to us we will keep it on our list:
Ø Henry Grater: more outreach, total of 10 members; would serve on another board
Ø Mark Simon: pass civil rights and parking legislation
Ø David Moran: Chair committee for media, help create an assistive technology toolbox, work on planning events for 20th anniversary
Ø Dan Shields: Persuade Sterling group to donate money
Ø Anne Marie Martin: Develop and add housing content to web and CIL, continue to do mentoring on housing, apply for one board
Ø Steve Teets: Service on a Veterans board and transit committee,
Ø Leslie Taylor: get certified for SSA hearings
Ø Rolf Kotar: write position papers and group to group newsletter
Ø Hope Krause: Recruit new members to organize and more advocates –continue to advocate for people
Ø Kristen Castor: Update CILSuite regularly and provide mentoring via email
Ø George O Brian: Create Brochures on AT and Emergency Preparation, get a van
Ø Joe Beaver: Improve financial standing, get on boards and commissions
Ø Amy Flynn: Recruit 10 new people; find ways to contribute to each program area
Ø Kevin Williams: Support challenges to Medicaid
Ø Christina Worner: Pull in resources with more technology backgrounds to figure out how to best serve the membership
Ø Wanda: Will help Hope, get more involved, do a fundraiser in Fort Morgan
Ø Julie Reiskin: Do more mentoring and bring people to meetings as often as possible
Meeting ended 12:15
