PCPID Meeting: August 22, 2016

Jack Martin Brandt, Chair

Ex officio Members and Representatives

Benjamin O. Tayloe, Jr and Clarette Yen

The PCPID Virtual Meeting Proceedings

Instructions and Roll Call

Allison Cruz and Sheila Whittaker

PCPID

Ms. Cruz thanked everyone for being on today’s call for the purpose of the quorum and that Sheila will be assisting me with the roll call.

Ms. Whittaker started the August 22, 2016 virtual meeting of the President’s Committee for People with Intellectual Disabilities (PCPID) with taking a roll call.  She turned the meeting over to Commissioner Aaron Bishop to provide greetings and welcoming remarks to the participants.

Greetings and Presentation of PCPID Chair

Aaron Bishop

ACL-AoD Commissioner

PCPID, Designated Federal Officer

Commissioner Aaron Bishop welcomed participants and announced a farewell to individuals who are no longer with the committee. He also thanked and welcomed the new members of the committee and/or individuals who have been reappointed to the committee. Commissioner Bishop introduced the new chairperson for the PCPID is Mr. Jack Brandt, who hails from the Commonwealth of Virginia. After his introduction, he turned the meeting over to ­­­­­­­­­­­­­Chairman Jack Martin Brandt.

Welcoming Remarks, Call to Order, and the Meeting Overview

Jack Martin Brandt

PCPID Chair

The PCPID Chair, Mr. Jack Brandt, introduced Amanda Ericson as his voice interpreter. He thanked Commissioner Bishop for his welcoming remarks. He also thanked the previous chairperson, Julie Petty, for her leadership and for shepherding two reports to the President. Chairman Brandt (Amanda Ericson) recognized M.J. for his services to the committee.

Chairman Brandt made the main motion to approve the minutes of the PCPID May 2, 2016 meeting.  Mr. Micah and Mr. Ricardo Thornton seconded the motion to approve the minutes of the last meeting. Commissioner Bishop asked if there were any abstentions.  Mr. Benjamin Tayloe and Mrs. Clarette Yen abstained. Chairman Brandt also made a motion to approve the meeting agenda, which was seconded by Ms. Liz Weintraub and Ms. Lisa Pugh.  The Committee voted to accept the minutes as well as the meeting agenda. 

Chairman Brandt welcomes new ex-officio members from the Department of Justice and from the Department of Health and Human Services. He stated that we are joined by Bo Tayloe. He is the Deputy Chief in the Special Litigation Section of DOJ and his colleague Clarette Yen, who is an attorney advisor with Disability Rights Section of DOJ. He also welcomed from the Department of Health and Human Services Melissa Harris, who is with the Centers for Medicare and Medicaid Services and her colleague Tina Ur with the National Institutes of Health.

Chairman Brandt informed the committee that the report to the President was transmitted on August 11^th and open the meeting to the members.

Open-Forum Discussions: Full Committee

Chairman Brandt began the session by reminding the committee of previous discussed topics, criminal justice, which includes healthy relationships, law enforcement, violence, emotional abuse and neglect, safety techniques, self-protection, bullying and being bullied, human trafficking, training of the prosecutors and victimization. The topics of discussion for the call included: Disability and dimension of diversity. Social awareness of people with I/DD, reduced areas of social isolation, especially around poverty (Lifespan).

Liz Weintraub raises concerns of the phrase lifespan.

Chairman Brandt stated Community life across the lifespan. It includes awareness of the cliff, which is when one becomes an adult, stress and lack of social support, successful transportation, community living or housing, healthy relationships, inclusive education of pathway to employment, and segregation. The next main topic that discussed was self-determination and supported decision-making, which includes rights of people with I/DD, self-advocacy for persons with I/DD, and is inclusive of the aging population.

The final topic is long-term services and support within Medicaid and that the committee talked about reform and modernization, portability issues, marriage penalties, the HCBS settings rules, and other topics. Different formats of the report were discussed including having multiple short reports or doing a full report on one topic. Chairman Brandt wanted everyone to know that the committee has issued reports during Presidential election years, and that is something that we need to consider and open up the meeting.

Andy Arias from the Department of Labor for some guidance on what specifically the Chair would want us to discuss.

Chairman Brandt stated that is an excellent question and would like to discuss possible topics and at the same time what type of format. This information will help determine if a face-to-face meeting is necessary including having speakers for the different topics.

Lisa Pugh stated that she had a little hard time following the listing of all the potential topics.  She asked what are people looking for and for more information on with regard to people with intellectual developmental disabilities.  She also stated that people are struggling with how services and supports create a meaningful day for people with intellectual and developmental disabilities and think it coincides with a lot of recent work with the Department of Labor and also the Department of Justice. Talked about HCBS and how to create a meaningful day – Integrated employment for PWD – States taking the short route and putting people in Day Support Services

Liz Weintraub stated that the Report will be released to a new administration – make a statement about PWD and what they can bring to the table.

Deborah Spitalnik stated that in addition to topics, think about the role of the Committee – not just content, but contribution – valuing and recognizing PWD.

Andy Arias mention the thought or topic of maybe intersectionality and how that could play a part in the committee and that he is an individual with a disability, and also LGBTQ.

James Brett stated that one of the big concerns centers on the low wages that are given to the direct support professionals and that they are the front line caregivers who support the individuals with ID. Mr. Brett stated that in New England, it’s very hard to recruit and very hard to retain. Turnover rates are very high. It’s caused a loss of care continuity. And unfortunately it’s also promoted abuse, mistreatment and other outcomes.

Commissioner Bishop interjects to provide information in two specific areas. One is Dr. Spitalnik specifically asked a question about our charter, which was renewed in May of this year and expires on September 30, 2017. He also reminded members that the Developmental Disabilities and Bill of Rights Act has three titles. Only one of those titles has ever been funded. The first title which has the Protection Advocacy Agencies, the University Centers for Excellence, the Developmental Disability Counsels and Projects of National Significance. One of the two titles is specifically on Direct Support Staff and that title and training of Direct Support Staff and that title has never been funded.

Richard Davis tied to what Liz said – what does life look like for PWD and what is the role of DSPs – Include history of PWD movement, what needs funding, how to achieve quality of life. He also suggested that a topic to explore is the upcoming the Advisory Committee on increasing competitive integrated employment final report authorized in the Work Force Innovation Opportunity Act.

Liz Weintraub discussed the DSP wages issue because she thinks that now that both of her parents are no longer here - about future.

Ricardo Thornton discussed decision making and how that maybe a topic. He believes that this is something that is really good – would like to know a bit more about that, how we can get - how we can put that out there on the table and hopefully we can keep using it.

Andy Arias talked about Foster Care system – crossover with PWD under guardianship and foster care – and the need to be a more stable way to look at it – how can individuals sustain independence when they don’t have family supports.

Deborah Spitalnik stated the direct support issue is a larger issue than wages and it was one of the areas that were tackled with the Goals Conference, the National Goals Conference that AIDD and ACL convened. She went on to say that it might be an important issue to address because it is not just an issue of wages, it is an issue of training and experience and career ladder and a variety of other things and we are going to be with the continued aging of the general population and changes in the labor force in competition with other groups who support like older people, as well as the fact that direct support is an issue tied to the HCBS Rule. It is also tied to the issue of what people do during the day - it is not only where people live.

Bo Tayloe with DOJ added that from the perspective of the work that they have done around enforcing the Olmstead Decision and helping states rebalance their service system so that folks can avoid living in an institution or leave an institution to live in the community. And that one of the central issues encounter on the ground as states stand up or expand community services is the skill set of direct support professionals and ensuring that the people who are working with individuals with disabilities actually know what they need to do and are in a position to do that and feel good about their jobs.

Liz Weintraub stated that it can also be a respect issue that if DSPs have minimal wages then they don’t respect people with disabilities. It trickles down from the top. DSPs don’t respect people with disabilities who they support and “care for” because nobody cares for them so why should they care.

Lisa Pugh feels that this discussion about DSPs really resonates and could touch a lot of really important areas. It is very timely, definitely at a crisis level in Wisconsin and Midwest and States across the U.S. about a real national issue impacting people with I/DD.

Kenneth Capone stated that he would like to see the board really take some time brainstorm ideas, with so many great ideas given.  Mr. Capone is focused on guardianship, especially for people coming out of institutions going into the community.

Commissioner Bishop answered part of Ricardo Thorton’s question by stating what members are currently doing is brainstorming for the next face to face meeting (which needs to be determine), sometime late fall, early winter like it where the committee would have a series of speakers that would speak to either a point or to multiple points/ideas to help the committee members figure out what topic to focus on.

Lisa Pugh stated that the Advisor Committee for increasing competitive integrated employment for people with significant disabilities just touched on the need for some provider transformation. It also reminded her of the shortage of trained direct support professionals that really understand how to support somebody for quality experiences in the community. Community integration really is at risk without these trained individuals.

Lisa Pugh also discussed incentives and the respect for people to get training to choose these community jobs, in addition to addressing the wage issue. At a critical juncture of building up institutional settings and institutional type supports there is little focus on transforming existing providers and existing resource streams into trained people in the community.

Deborah Spitalnik added on what Liz Weintraub was saying. There are intersections at various levels.  People often leave - providing residential supports to providing day supports because it gives them a different kind of work day in terms of other demands on their time so there is immediate intersection there.  People in direct support roles are often working multiple jobs and not even then raising themselves and their families out of poverty that with the home and settings rule the kind of both the skill level and the creativity for people to be really responsive to inclusive arrangements, not just relying on facilities is very problematic and that there are some underlying structural issues.

Lisa Pugh mentioned competitiveness with facilities. There is also the competitiveness with other systems. One of the problems is trying to create more meaningful career ladders in direct support in the disability field. There are not the career building opportunities that there are in health care for example where people might go from a direct support role to a LPN role to a nursing role or that equivalent.

That there are underlying structural issues about how the field of disability is organized and how health care is organized which could include nursing facilities that are very problematic. There are also big labor force issues because here is a growing population of people who need support as Liz referenced and also in terms of aging and a much smaller work force going into the future.

Jim Brett added to the direct support discussion. They are called professionals but for the most part they are making minimum wage and in a few areas they are making above, but not much. The average is about $10 an hour.

A situation was relayed about a direct support professional leaving a group home because the person was offered a position at McDonalds that pays more; yet they are called professionals. Direct support professionals are not respected because they are not paid well but they are asked to do more. These workers must be lifted out of poverty; they can’t be working two, three jobs.

Melissa Harris stated that she representing Health and Human Services and works in the Centers for Medicare and Medicaid Services and particularly in the Medicaid side and they have been discussing a lot of the topics raised today: Community Integration for Individuals with Intellectual or Developmental Disabilities. She is in the part of CMS that issued the regulation on home and community based settings for purposes of Medicaid reimbursement and have also been talking with states as they work to implement the two Department of Labor regulations that really spoke to the provision of overtime for direct support works and some front line managers from working with a 40 hours a week.

Ricardo Thornton asked about the DD Act and asked to talk a little about what the implications of funding that title might be for some of the things we discussed around direct support and is there any way that Title could be circulated to the members?

Commissioner Bishop stated that it can definitely be sent to everybody to review.

Deborah Spitalnik reinforced that the DD Act is 15 years old - the world looks very different at so many levels. There was no - Settings Rule, not as many states at the time the Act was passed were completely reliant on Medicaid for the funding of community services so that has created different imperatives.  Dr. Spitalnik also suggested keeping in mind what the next congress looks like. There hasn’t been either the stomach or the climate to reauthorize the Act and if there was there would need to be transformative approach to the issue of direct support.

Closing Remark

PCPID Chair

Chairman Brandt thanked all the PCPID members for their participation in the meeting and for their productive discussions. 

Meeting Adjournment

PCPID Chair

Chairman Brandt made the motion to adjourn.  The meeting was adjourned.

PLEASE NOTE:

The following comments by member Kenneth Capone was emailed to the PCPID Chair immediately following the call.  Because the comment was not received during the actual call, it is not part of the “formal minutes”. 

Comments: "I think the DSP issue is huge for people with disabilities as I’m sure you are well aware of.  I also think what Lisa said about day services and the HCBS rule is important too.  I think we could combine the 2 issues in a report.  I feel both topics has to do with the “independence or success” of people with disabilities"