According to the National Core Indicators (NCI) website,
“NCI is a voluntary effort by public developmental disabilities agencies to measure and track their own performance.
“The core indicators are standard measures used across states to assess the outcomes of services provided to individuals and families. Indicators address key areas of concern including employment, rights, service planning, community inclusion, choice, and health and safety.”
The degree of loneliness that a person with a developmental disability experiences is one of those indicators. Here is a chart showing the overall proportion of people with DD who do or do not experience loneliness:
This is a chart generated using data on the website showing the settings in which people live who sometimes or often feel lonely:
This seems to contradict the conventional wisdom that people in larger more structured settings are generally isolated from other people and feel more lonely than people living in their own apartment, for instance. On the other hand, the type of setting where one lives may not be an important factor in terms of how often they feel lonely. Perhaps the appropriateness of the setting to the needs of the individual is more important.
The use of data of this type can be tricky and it is hard for people without a background in statistics to evaluate what it is really telling us. Unfortunately, generalizations about the subjective experiences of people with disabilities are used to promote policies that may not apply to a substantial number of people with DD or may be harmful to people who do not fit the generalization.
Check out the website and see how it applies to you and your family member with a disability.
Michigan Protection & Advocacy Service, Inc. (MPAS) is the
independent, private, nonprofit organization designated by the governor
of the State of Michigan to advocate and protect the legal rights of
people with developmental disabilities in Michigan. MPAS services include information
and referral, short-term assistance, selected individual and legal
representation, systemic advocacy, monitoring, and training. The MPAS receives funds primarily through the federal Developmental Disabilities Assistance and Bill of Rights Act of 2000 (a.k.a The DD Act).
The MPAS also provides federally-funded services to other disability groups. Here is a list of their programs.
MPAS seeks your input on their 2016 advocacy priorities and objectives. Comments will be accepted through November 16, 2015 and should be sent via email to asteffen@mpas.org.
Here is a link to the Priorities and Objectives in different formats - Word document, PDF, and Text file. These are the same as the priorities listed below. ***********************
MPAS Board approved Priorities available for public comment:
Priority #1: Eliminate abuse and neglect
Objective 1A: Individuals with disabilities will not be subjected to restraint or seclusion.
Objective 1C: Individuals with disabilities will not be subjected to abuse or neglect, including inappropriate or coercive treatments.
Priority #2: Increase the protection of individual rights, independence and self-determination
Objective 2A: Individuals with disabilities will not be deprived of their rights and will be able to engage in self advocacy.
Priority 3: Eliminate employment barriers and protect rights
Objective 3A: Improve access and rights to services within vocational rehabilitation and centers for independent living
Objective 3B: Individuals with disabilities will assert their employment rights under the ADA and/or Section 504, as well as other employment laws, e.g. Fair Labor Standards Act, and will have employment options in the competitive and integrated workforce.
Objective 3C: Individuals with disabilities will have access to social security work incentives. Objective 3D: Beneficiaries with disabilities will be free from exploitation, abuse, and neglect by their representative payee.
Priority 4: Improve access to services
Objective 4A: Individuals with disabilities will be assured services, including housing, transportation and assistive technology, identified to support them in the community and prevent institutionalization or segregation.
Objective 4B: Governmental entities and providers of critical services will be accessible and provide needed accommodations.
Objective 4C: Individuals with disabilities will have access to services, including assistive technology, which supports them in institutional/facility/service provider settings in order to promote discharge and community inclusion.
Priority 5: Ensure the right to a high quality education
Objective 5A: Students with disability-related behavior will be identified and evaluated for special education.
Objective 5B: Eligible students at risk of discipline or push-out due to disability-related behavior will remain in school.
Objective 5C: Transition needs from post education to community living will be identified and addressed.
[More information on Protection and Advocacy and the DD Act coming soon!]
Priority 4: Improve access to services Objective 4A: Individuals with disabilities will be assured services, including housing, transportation and assistive technology, identified to support them in the HOME AND COMMUNITY OF THEIR PREFERRED CHOICE AS EXPLORED AND DOCUMENTED IN THEIR PERSON CENTERED PLANNING PROCESS. Objective 4B: Governmental entities and providers of critical services will be accessible and provide needed accommodations. Objective 4C: Individuals with disabilities will have access to services, including assistive technology, which supports THEIR RETENTION OR TRANSITION TO A HOME AND COMMUNITY OF THEIR PREFERRED CHOICE AS EXPLORED AND DOCUMENTED IN THEIR PERSON CENTERED PLANNING PROCESS.
This is a Draft Agenda for the 11/9 and 11/10/15 meetings of the President's Committee for People with Intellectual Disabilities.
****************************** 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
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
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.
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.
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.
