President's Committee for People with ID : Draft Agenda for 11/9 & 11/10/15

This is a Draft Agenda for the 11/9 and 11/10/15 meetings of the President's Committee for People with Intellectual Disabilities.

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Draft Meeting Agenda
November 9-10, 2015

The Holiday Inn® Washington - Capitol Hotel
550 C Street, S.W.
Capitol Ballroom
Washington, D.C. 20024

Toll Free Dial-in Number:         888-469-0957
Public Audiences’ Passcode:      8955387

Day One: Monday, November 9, 2015
9:00 a.m. – 9:05 a.m.        Greetings and Introduction of PCPID Chair
Aaron Bishop, Commissioner, Administration on Disabilities
Designated Federal Official (DFO),President’s Committee for People with Intellectual Disabilities

9:05 a.m. – 9:15 a.m.        Opening Remarks, Call to Order, and Introduction of Special
Guests Julie Ann Petty, Chair President’s Committee for People with Intellectual Disabilities

9:15 a.m. – 9:20 a.m.        Approval of Agenda and Minutes (August 3-4, 2015)
PCPID Chair and Members

9:20 a.m. – 9:30 a.m.            Self-Introductions: Citizen Members and Ex officio Representatives

9:30 a.m. – 9:45 a.m.    Updates
Coleman Institute for Cognitive Disabilities Conference
Julie Petty, Aaron Bishop and MJ Karimi

National Council on Disability Quarterly Meeting - Dan Habib

9:45 a.m. – 10:15 a.m.    Discussions and Presentation of the PCPID Wiki - Further Instructions on Recording the Videos - Jack Brandt, Dan Habib and MJ Karimi (David O’Hara?)

10:15 a.m. – 10:30 a.m.    BREAK

10:30 a.m. – 11:30 a.m.    Topic #1: Disability as a Civil Rights Issue and Dimension
        of Diversity   

Curtis L. Decker, JD (to be introduced by Lisa Pugh)
Executive Director
National Disability Rights Network
Washington, DC

Tawara Goode (to be introduced by ________ )
Director, National Center for Cultural Competence
Georgetown University Center for Child and Human Development
Washington, DC

11:30 a.m. – 12:00 p.m.    Question and Answer (Q/A) Session

12:00 p.m. – 1:00 p.m.    LUNCH (on your own)

1:00 p.m. – 2:00 p.m.        Topic #2: Ending Segregation in Education and Beyond

Ending Segregation in Education and Beyond

Erik Carter (to be introduced by Dan Habib)
Associate Professor, Department of Special Education
Vanderbilt Peabody College
Nashville, TN

Ending Segregation in Education and Beyond (Self-Advocacy)

Julia Bascom (to be introduced by Liz Weintraub)
Deputy Executive Director, Autistic Self Advocacy Network (ASAN), Washington, DC

2:00 p.m. – 2:30 p.m.    Q/A Session

2:30 p.m. – 2:45 p.m.        BREAK (15 minutes)

2:45 p.m. – 3:45 p.m.        Topic #3: Self-Determination and Supported Decision-Making
       (Self-Directed Life)

Robert Dinerstein (to be introduced by Sheli Reynolds)
Professor of law
Associate Dean for Experiential Education
American University, Washington College of Law
Washington, DC

Morgan Whitlatch, JD (to be introduced by Betty Williams)
Legal Director
Quality Trust for Individuals with Disabilities
Washington, DC

    Ryan King (to be introduced by Morgan Whitlatch)
    Self-Advocate
    Washington, DC
   
3:45 p.m. – 4:15 p.m.    Q/A Session

4:15 p.m. – 4:30 p.m.    Recapping the Day’s Discussions and Providing Guidance
   and Directions
Julie Petty, Chair
Aaron Bishop, Commissioner and DFO

Day Two: Tuesday, November 10, 2015

9:30 a.m. – 9:35 a.m.    Call to Order
Julie Ann Petty, PCPID Chair

9:35 a.m. – 11:00 a.m.    Discussions on the Potential Topics
    Voting on the Potential Topics
PCPID Members (Full Committee)

11:00 a.m. – 11:15 a.m.    BREAK 

11:15 a.m. – 12:15 p.m.    Development of Draft Statements and Recommendations for
  2016 Report to the President
PCPID Members (Full Committee)
 
12:15 p.m. – 1:15 p.m.     LUNCH (on your own)

1:15 p.m. – 2:15 p.m.    Approval of Draft Recommendations of 2016 Report to the President - PCPID Members (Full Committee)

2:15 p.m. –2:30 p.m.        Summary of Deliberations, Proceedings, and Next Steps
Julie Petty, Chair
Aaron Bishop, Commissioner and DFO
PCPID Members (Full Committee)

2:30 p.m.    Suggestions for Improvements (Evaluation Form) and Adjournment
    The completed form should be submitted to staff on the second day of the meeting
 
Happy Veterans Day

Federal Appeals Court rules that Illinois may close Murray Developmental Center

This is from the ARC’s newsletter Capitol Insider for the week of October 26th, 2015:

Rights/Long Term Services and Supports -- Court Rules That Illinois Can Close Murray Developmental Center: Citing a nation-wide trend to increase home and community based services (HCBS) for people with I/DD, the U.S. Court of Appeals for the Seventh Circuit recently ruled on the contested closure of Murray Developmental Center (Murray DC). The court held that Illinois could move forward with closing the facility. The ruling cited a growing number of studies that show that people with disabilities experience a higher quality of life in community-based settings as opposed to facility-based care. The ruling in its entirely may be viewed here.

Here is the rest of the story:

Despite the ruling by the U.S. Court of Appeals, the Rauner administration has already determined that Murray Center is not closing and all seven of the state’s developmental centers are in the 2016 budget, according to a report from WJBD News, 5/20/15.  Rita Winkler, President of the Murray Parents Association also reported in May that a new Director of Nursing was being hired for Murray and the process was underway to hire a new Assistant Director and Director of the facility.

While focusing on the relatively small number of residents living in developmental centers for people with intellectual disabilities, The ARC and other federally-funded disability rights advocates divert attention from the larger issue, the overall failure of Illinois to adequately serve people with DD. 

The Court decision of 10/15/15 includes these disturbing statistics: The State Developmental Centers have about 1800 residents, while roughly 10,000 people with severe developmental disabilities live in community-based facilities housing 1 to 8 individuals. The Illinois Department of Human Services provides services to approximately 25,000 people with DD. Another 23,000 are on a waiting list to receive services, of whom 6,000 are considered to be in emergency situations, yet do not receive even essential services from the State of Illinois. 

For all the talk about trends in delivering services in community settings, the huge waiting list and failure to provide even basic services to so many people with severe developmental disabilities is the real story that cannot be solved and may even be exacerbated by closing the state’s developmental centers.

Chicago, IL : Misericordia hosts conference on community choice

Misericordia,  a network of services that provides a full continuum of care for over 600 people with mild to profound developmental disabilities in Chicago, hosted the “Together for Choice” conference from October 21 - 23, 2015.

Misericordia provides a range of services from a skilled nursing residence, group homes, and apartments on its 31-acre campus to small neighborhood homes in the surrounding community. It also provides employment opportunities for people with a variety of skill levels in its bakery and coffee shop and other on- campus businesses and off-campus community businesses. The quality of care and the dedication of its staff to the people they serve is obvious to anyone taking the time to tour its facilities and talk to the staff and residents.

It is precisely these kinds of programs that serve a full range of developmental disabilities in a variety of settings that are a likely target for de-funding under the Home and Community Based settings (HCBS) rule that was issued by the federal Centers for Medicare and Medicaid Services last year. While the rule encourages states to shun any association with “institutional” care in its funding of HCBS, the importance of maintaining a full continuum of care to people with severe and complex disabilities is exemplified by the success of Misericordia’s programs and its popularity with the families and individuals it serves.

The Coalition for Community Choice came together in Chicago to represent the many concerns of families over the implementation of the HCBS rule and the CCC's determination to assure that all people with developmental disabilities have available to them a full range of options to meet their needs and to allow them choice in how they live their lives.
 
A Chicago ABC7 newscast of the event, describes the “The Together for Choice” conference:

"It's giving us the opportunity to pull together many like minds, people that are providing excellent services whether it's a campus setting, a farm setting, individual homes in the community, whatever it is as long as it's for the people that we serve," said Geana Connelly, Misericordia administrator.

"You can be big and good or big and bad. You can be small and good or small and bad. It all depends on the people that are operating these services and staffing that is within those services," Sister Connelly said.

The people at the conference say they just want legislators to remember that the primary concern should be the quality of care, not the size of the facility.
 
The “Together for Choice” conference was covered by a Chicago ABC 7 newscast on October 25th, 2015. See the report by Hosea Sanders and video of the newscast here. 

Michigan : 2015 HCBS Waiver Conference, 11/17 - 11/18/2015

The Annual Home and Community Based Waiver Conference for 2015 will be held on November 17 & 18, 2015, at the Kellogg Hotel and Conference Center in East Lansing, Michigan.

Conference Objective:  This conference will provide technical assistance and training on the implementation and maintenance of the Children’s Waiver Program (CWP) and the Habilitation Supports Waiver [for people with developmental disabilities] (HSW), clinical issues, and administrative functions relevant to these waivers. Additionally, this conference will provide training in ASD, evidence-based services, highlight programs across the state, and provide technical assistance on implementation of the Medicaid/MIChild Autism Benefit.

Who Should Attend:  This conference contains content appropriate for case managers, supports coordinators, clinicians, behavior analysts, administrative staff, providers, autism coordinators, people receiving services and family members and social workers at all levels of practice (beginning, intermediate and/or advanced).

Rate: Full Conference $145; One Day Rate: $90 

Special Rate:  A special $20 conference rate will be offered for people receiving waiver services and their family members.
 
Certificate Awarded:  At the conclusion of this conference, bring your CEU verification form to the MACMHB Staff to be initialed.  You will turn in the top sheet and retain the bottom sheet which serves as your certificate of participation.
 
CONFERENCE AGENDA will be added soon! Check the Michigan Association of Community Mental Health Boards website here.

Michigan : 2,090 Rosie the Riveters break world record at Willow Run Airport

The original Rosie the Riveter helped win World War II right here in Michigan at the Willow Run Airport in Ypsilanti. See the Ann Arbor News.

Fall Fishing on Walloon Lake

California : Crisis in Community Care and the Desperate Situation for Service Providers

This is from Bay Area Autism News, September 2015: "The Desperate Situation for Service Providers"

Carol McKinney from Harmony Homes testifies before the California legislature about the lack of funding and what it means to the people her agency serves and the workers who have endured the shameful lack of commitment to people with developmental disabilities.

Michigan: My Job, My Choice

From the ACCSES Weekly Windup for October 14, 2015:

At MARO, we believe in establishing raised expectations - that all working-age citizens with disabilities in Michigan can have access to competitive, integrated employment.  MARO has also recognized the trend in current public policy emphasizing competitive integrated employment - jobs in the community, at or above minimum wage, and interacting with others without disabilities - as the priority outcome for all job seekers.  But it is further recognized that a comprehensive array of employment services should be a part of a menu of options, and people with disabilities in Michigan should be able to access these options based on each individual's desires, needs, goals, and informed choice.  That's why MARO members provide a full spectrum of employment options for people with disabilities in Michigan - based on respect for the individual's choice.

MARO is a Michigan organization for providers of rehabilitation services.

Ohio Congressional Delegation supports full range of options and choice for DD in community settings

This is a letter from the Ohio Congressional delegation to CMS urging flexibility and consideration of the intense needs of people with intellectual and developmental disabilities in implementing the Home and Community Based Services rule.

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September 23, 2015

Mr. Andrew Slavitt, Acting Administrator
Centers for Medicare & Medicaid Services
Department of Health and Human Services
200 Independence Avenue, SW
Washington, DC 20201

Dear Acting Administrator Slavitt:

We appreciate your willingness to work with the state of Ohio on its Transition Plan to ensure compliance with the final Home and Community Based Services (HCBS) rule issued by the Centers for Medicare & Medicaid Services (CMS) in January of 2014. We are writing to ask that you provide the State of Ohio with the flexibility and time necessary for a successful transition — one that prioritizes the safety and wellbeing of those with developmental disabilities.

We request that during the rule’s implementation that consideration be given to the unique needs of all affected individuals, including those who have intellectual and developmental disabilities. As published, the rule does not holistically attend to the Intellectual Developmentally Disabled (I/DD) population, many of whom may not be capable of community employment even with specialized job training and supported job coaching due to their intense needs. The overriding concern is that prioritizing community employment without also considering a person’s individual circumstances, needs, and preferences may pose a health and safety risk either due to these individual’s unique challenges or by subjecting them to an environment that may not be in their best interest. [emphasis added] Without adequate time and support, the rule’s implementation could result in the elimination of a choice that provides I/DD Ohioans with daily structure, meaningful activities, and a productive work environment.

We support the goal to provide individuals with every available opportunity to participate and hold employment in the community. To achieve this goal, the option to choose the best-suited program must be available to communicate, articulate, and effectively argue for the type of support they require. We urge you to consider the current reliance on and future state of the full range of opportunities for this population — including, but not limited to community employment, adult day programs, and sheltered workshops — and the individual’s preference for these programs when implementing this rule. To ensure success, adequate time and planning must be allowed to guarantee the health, safety, and well-being of all individuals who will be entering a more community-based work environment. We encourage you to work closely with and provide flexibility and support for the State of Ohio to ensure that the rights and interests of all affected individuals are prioritized throughout this transition period.

Thank you for your attention to this matter. [This is followed by contact information for Senator Portman’s or Senator Brown’s staff.]

Sincerely,

The letter is signed by John Boehner, Speaker of the House, U.S. Senators Rob Portman and Sherrod Brown and members of Congress Bill Johnson, Robert Latta, Brad Wenstrup, Steve Chabott, Rob Gibbs, David Joyce, Michael R. Turner, Marcia Fudge, and Marcy Kaptur

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PDF version of the letter with signatures

Home Care Rule to go into effect

New wage protections for home care workers will go into effect soon and will have an impact on consumer-directed programs. In Michigan, this is known as Self-Determination, an option that must be made available to recipients of Medicaid-funded services through the Community Mental Health system. (Other more traditional service options must also be available.) Self-determination allows consumers flexibility in hiring their own direct care workers. Similar programs are offered in other states.

National disability rights organizations have put together a fact sheet describing the rule and exemptions from it. It will most likely affect consumer-directed programs, which allow the person receiving services to hire his/her own worker (oftentimes family members or close friends) and direct the care the worker provides, and shared living programs where the consumer and provider live together.

Action Steps recommended to prevent cuts in services:

    •    Make sure your state is aware of and preparing now for the new home care rule to take effect.
    •    Push your state to analyze which programs the rule affects and what the budget impact will be for these programs.
    •    Advocate for additional funding in impacted programs.
    •    Make sure your state does not comply with the rule in ways that cause harm to consumers and workers.
    •    Ensure that your state uses Medicaid to help with additional costs but without impacting individuals access to services.
    •    Do not allow your state to abandon consumer-directed programs.
    •    Make sure your state educates individual consumers about the rule even if the state is not a “joint employer” in the program.

For more information, see the Fact Sheet and Action Steps.There are a wide array of consumer-directed programs. These documents provide details on which are affected by the new rule and which are not. See also The DD News Blog.

Oregon : Fairness Hearing scheduled on settlement agreement in Sheltered Workshop case

A settlement was reached in September 2015 in the class action lawsuit Lane v. Brown that would reduce the number of sheltered workshop placements in Oregon and increase supported employment opportunities for people with disabilities.

The court has scheduled a full hearing to determine whether the Proposed Agreement is fair, reasonable, and in the best interests of the class.  Any class member who wants to object to or comment on the Proposed Agreement must file a written objection or comments on or before October 29, 2015 with Kathy Wilde at Disability Rights Oregon, 610 SW Broadway, Suite 200, Portland, OR 97205 at kwilde@droregon.org .

The Fairness hearing for the Lane v. Brown settlement,  will take place on December 7, 2015 at 9:30 AM at the federal courthouse in Portland. Individuals who are part of the class (those who are in or have been in sheltered workshop services on or after January 2012) can come forward and state their opinion regarding the settlement.

Here is the Class Final Notice  and additional documents related to the settlement.