Message from VOR to Congress: "Build Back Better", but don't ignore the needs of our family members with the most severe intellectual and developmental disabilities

VOR (a Voice Of Reason) held its annual Legislative Initiative last week, not in-person in Washington, D.C. as it is usually done, but virtually with Zoom meetings, emails, and good old-fashioned telephone calls. The message was clear and easy to understand: the ideology that "everyone does better in the community" is not universally supported within the disability community and it is not the reality that VOR families experience when programs and residential options are undermined or eliminated in the name of integration and inclusion.

The following is from the VOR Weekly News Update for May 21, 2021.

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Why Do Good For Some? Why Not Everyone?

VOR's Legislative Initiative has been in full swing over the last week, and our meetings with people in congressional offices are likely to continue through next week and beyond. One theme that has come up over and over has been the idea that the Administration and members of Congress plan to make major changes, many would say long overdue changes, to the system that deals with services, supports, and employment opportunities for people with I/DD, and that we don't want our loved ones, and our choices for their care, to be swept aside in this effort to do good things.

We worry that the effort to rebuild the system is aimed at only supporting one ideology, the "everybody does better in the community" ideal, or the notion that HCBS [Home and Community-Based Services] services provide a level of care equal to that of Intermediate Care Facilities (ICFs). We know, from our own experience, that neither of these statements are true.

[ICFs/IID or Intermediate Care Facilities for Individuals with Intellectual Disabilities are federally-licensed and Medicaid-funded residential facilities, some as small as 4-bed group homes up to much larger settings. They serve people with the most severe degrees of I/DD and autism, and their families and guardians. These residential facilities offer a full range of services and 24-hour-around-the-clock support to meet the residents considerable needs.]

So we ask that our choices be supported in this effort to do good. The Biden Administration speaks about building back better. We'd like to take it one step further: Let's Build It Right, this time. Stop pitting the interests of one group of people with I/DD against the interests of another. Stop talking about a non-existent "institutional bias" while you are closing institutions and increasing funding for HCBS.

We support the idea of taking people off of waiting lists. But give them CHOICE. Support all options, and give people the opportunity to use whichever option best suits their needs, at this point in their lives. And if and when their needs change, let them then choose an appropriate option to meet their needs at that point in their lives. Just like our society does with non-disabled individuals.

The first two articles in this week's newsletter exemplify what we encounter daily. The Biden Administration, through the American Rescue Plan as passed by Congress, is giving states flexibility to expand disability services in the wake of the COVID-19 pandemic. But the money is only supposed to go to HCBS services. People in ICFs got COVID, too. The staff of ICFs got COVID, too. Why is the Federal Government only giving extra money to the recipients of HCBS services and their staff?

Again, we see that 500 CEO's have committed to programs that advance inclusion for people with disabilities. That is certainly laudable. But why are people still trying to shut down opportunities that people with I/DD currently enjoy, and thrive under, that do not fit the criteria of "integrated employment"?

Why are there no companies trying to create opportunities for people who have skills and the desire to work, but who are, for one reason or another, not candidates for succeeding in a competitive, integrated environment?

We ask that all people be included in the solutions, and that all options be funded. If there is going to be a $400 Billion increase in spending on disability services, shouldn't it be spent on the people who receive the services, and not divided according to the different ideologies or separate funding streams that have turned our systems into a them vs us system?

Let's build it right this time. Let's provide funds to meet the needs and aspirations of all individuals with I/DD, and let's make sure we fund all of the options that meet the needs of this diverse community.

Abelone Kelley May 28, 2021 0

Comments on the proposed Home and Community Based Services Access Act of 2021

The Home and Community Based Services Access Act of 2021 (HCBS Access Act) has been drafted for the purpose of seeking comments on various aspects of Mediciad-funded care and services. It would provide more funding to HCBS in community settings and eliminate waiting lists for services and much more, but, as always, the devil is in the details. Comments were due on 4/26/2021, but there should be more opportunities to comment as the proposal moves toward becoming legislation in the US House and Senate. My Congresswoman Debbie Dingell, who represents Michigan's 12th Congressional District, is among those sponsoring this legislation. This is the announcement asking for comments and Representative Dingell's Website with more information.

I'm good at finding devils in the details, a useful exercise when it appears you are being offered a bonanza of services and benefits, but in exchange, you are also being restricted from accessing benefits more appropriate for your disabled family member.

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April 26, 2021

From: Jill R. Barker, Ann Arbor, Michigan

Re: Comments on the proposed 2021 Home and Community-Based Services Access Act (HCBSAA) 

To: Representative Debbie Dingell, Cannon House Office Building, Room 116
Washington, D.C. 20515-2212

Senate Special Committee on Aging, Dirksen Center Office Building, G 31 Dirksen Center Office Building:

Chairman Bob Casey, Ranking Member Tim Scott, Senator Maggie Hassan,Senator Sherrod Brown

Dear Representative Dingell, Chairman Casey, Ranking Member Scott, Senator Hassan, and Senator Brown, and other members of the Senate Special Committee on Aging:

I am the mother of two adult sons, Danny Barker (age 44) and Ian Barker (age 36), who have profound, life-long intellectual and developmental disabilities (I/DD).

Danny has severe cerebral palsy, intractable seizures, reflux, a permanently dislocated hip, a feeding tube, and a severe visual impairment. He is unable to communicate in any specific way, although we know when he is feeling good and when he is not. He experiences frequent medical crises - in 2017, he was treated in the Emergency Department at the University of Michigan more than 15 times for seizures that would not stop and five times for aspiration pneumonia, for which he was hospitalized. He lives in a community group home with five other people with similar needs. Despite the severity of his disabilities, he is happy and content with his living situation and gets a great deal of love and attention in that setting.

Ian had problems at birth similar to those of his brother. He also has profound intellectual and developmental disabilities, and, like Danny, he needs total care. He is unable to recognize dangerous situations, much less to protect himself from them. He shares a room with his brother in the same group home where they receive good care.

COMMENTS:

The continued availability of good care that is appropriate to my sons’ needs is precarious due to Michigan’s chronically underfunded mental health system and misdirected efforts that assume that full inclusion in “the community” is attainable and desired by all people with disabilities and their families. The failure to acknowledge the limitations of the full inclusion ideology and the reality that my sons will never attain the desired outcomes of independence and self-determination hamper efforts to improve their quality of life and the effectiveness of programs that serve their needs.

Among the national disability organizations that have commented on the proposed HCBSAA bill, I fully endorse the comments from VOR, a Voice of Reason, NCSA, the National Council on Severe Autism, and the analysis from TFC, Together For Choice. These are organizations that represent people like my sons, who have the most severe disabilities and are the most often underrepresented by other disability organizations and by government sponsored national councils and advisory committees. The organizations mentioned above support a full range of residential and service options to meet the diverse needs of people with severe I/DD and severe autism. 

The first reason listed for the proposed HCBSAA is incomplete and misleading. “In order to fulfill the purposes of Americans with Disabilities Act to ensure people with disabilities and older adults live in the most integrated setting.”

The Americans with Disabilities Act states that “A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” [emphasis added]. This makes clear that the appropriateness of the setting to the individual is of primary importance.

The ADA does not restrict individuals from receiving needed services in specialized settings for people with disabilities nor does it allow public entities to prevent access to services and benefits available to all.

The 1999 U.S. Supreme Court Olmstead decision affirms this interpretation of the ADA and includes protections and choice for people in institutional settings and those needing an institutional level of care.

Workforce Development

I was glad to see that one of the purposes of the proposed legislation is “…to improve direct care work quality and address the decades long workforce barriers for nearly 4,600,000 direct care workers giving support to people with disabilities and aging adults in their homes and communities”. Most direct care workers in both community, institutional, and other congregate settings, have difficult jobs that are undervalued and often unrecognized for their importance. When I came to the end of the proposed bill), I was disheartened by this – “SEC. 7. WORKFORCE DEVELOPMENT…To be supplied” (at least, this is how my version of the bill reads). This is such an important and neglected aspect in providing care to people with disabilities that perhaps it deserves its own piece of legislation. I believe that poor pay, poor working conditions, and lack of status in the workforce could be a leading factor in the collapse of the system of care for people with disabilities, which at times seems imminent. 

Purposes of the HCBS Access Act

Justification to require State Medicaid coverage of home and community-based services is based on false and misleading statements. For example, “…decades of research and practice show that everyone, including people with the most severe disabilities, can live in the community with the right services and supports.”

No competent researcher would make such sweeping statements and pretend that they knew what is possible or desirable for all people with disabilities.

I was on the Michigan Developmental Disabilities Council from 2013 to 2016. At one of the early meetings I attended, a representative from Michigan Protection and Advocacy Services [now Disability Rights Michigan] made the statement that “…we now know that all people with developmental disabilities can work in integrated, competitive work settings for at least minimum wage.”

Whoever decided this, did not talk to me and they never met my sons.

Non-existent and poor-quality services that do not appropriately serve people with severe disabilities, as well as unsafe and unaffordable housing for people with disabilities in the community are staggering problems throughout the country. This legislation would likely push states to move people, often against their will, into unsafe and unprepared communities from congregate settings without dealing with the reality of the present crisis in community care. It is highly unlikely that this proposed legislation will solve all these problems even with new infusions of funding, when the policies do not acknowledge the full range of need and the services to provide for those needs. 

Individualized Assessment allows determination of services and supports by a State approved health care worker with no discernable way for the person with a disability or a legal representative to challenge this determination.

While promoting the idea of independence and self-determination for the person with a disability, the proposed HCBSAA has no discernable way that the person with a disability, or their legal representative, when appropriate, is allowed to participate in determining the needs of the eligible individual. Nor is there any mention of how determinations made by a state approved health care provider can be challenged or overturned:

The HCBSAA requires an individualized assessment of the person with a disability “to determine a necessary level of services and supports to be provided, consistent with an individual’s functional impairment…” The health care provider must be approved by the state to make the determination of the level of services and support.

To make sure that the state approved health care provider does not go too far astray from the desired outcome of policies set forth in the HCBSAA - that everyone can and should be served and live “in the community” - the proposed bill requires that the assessment be “…conducted with the presumption…that each eligible individual regardless of type or level of disability or service need, can be served in the individual’s own home and community; and…at the option of the individual, that services may be self-directed…”

A “presumption” is a belief that is held until there is evidence to the contrary - that the belief is no longer true or practical to hold on to. An assessment should be a means of gathering evidence so that one does not have to make too many presumptions and that leads to conclusions based on evidence and truth. An Assessment should inform the person with a disability and others involved in determining needs and supports for the individual, but the Assessor should not be the person who makes those determinations alone.

There is also a requirement for a Person-Centered Care Plan, based on the individual assessment. The Plan is constricted again by the determinations of the state approved healthcare provider who does the assessment.  

HCBS Services Specified

Many of the services are conditional on the person with a disability conforming to the expectation that they will be integrated into “the community” and will not need much in the way of specialized services or residential care. These include: 

Supported employment (employment in integrated, competitive work settings) and integrated day services, leaving out non-competitive specialized work programs for people with more severe disabilities and specialized day programs for people with severe disabilities.

Services that enhance independence, inclusion, and full participation in the broader community, but leaving out specialized services for other purposes.

Non-emergency, non-medical transportation services to facilitate community integration, but leaving out transportation for other purposes.

Necessary medical and nursing services not otherwise covered which are necessary in order for the individual to remain in their home and community, including hospice services, but leaving out services for other purposes, such as medical services to keep an individual alive, safe, and comfortable.

Specification of HCBS Services by a committee

A panel composed of individuals with disabilities in need of Home and Community-Based Services and organizations representing disability groups, local, state, and federal agencies, family organizations, provider organizations, etc. will submit a report to Congress identifying additional services specified as Home and Community-Based Services with the goal of increasing community integration and self-determination for individuals with disabilities receiving such services.

There is a great deal of controversy in the disability community. Unless the members of the panel are carefully selected to agree with each other, I anticipate that this will create the appearance of a hornet’s nest of activity, but not result in anything of value coming out of it. It could impose even more limits on choice. I do not understand why anyone thinks this is a good idea.

I agree with this statement from the National Council on Severe Autism,

“The HCBSAA ‘Advisory Committee’ would place extraordinary veto power in the hands of a few advocates. The proposed Advisory Committee is designed to be made of a majority of self-advocates and allies, with a minority (if any) representation from those who lack the capacity to advocate for themselves, and who must rely on parents/guardians/conservators to represent their interests… A small, unelected and unaccountable committee would be handed broad discretion to determine what qualifies as HCB services across the country, trumping whatever needs and preferences of severely disabled individuals, an idea that is clearly untenable…”

Thank you for your consideration of my comments on behalf of my sons. I look forward to the day when a truly inclusive approach to Medicaid Home and Community-Based Services takes into account the full spectrum of needs for this diverse population.

Jill R. Barker, Ann Arbor, Michigan

Abelone Kelley April 27, 2021 0

Washtenaw Coalition for Community Choice Meeting - 4/9/2019

Join us for a meeting to get started on creating a housing community in Washtenaw County for Adults with I/DD including ASD based around a working farm, but still in Ann Arbor/Saline area. 

Tuesday, April 9, 2019 

6:30 – 8 PM 

2144 S. State St. 

Ann Arbor, MI 

Keller-Williams offices top floor


Show Map

 

Hosted by the Washtenaw Coalition for Community Choice (WCCC)

Increasing Options and Decreasing Barriers to Housing Choices for those with Intellectual and Developmental Disabilities (I/DD) in Washtenaw County 

This will be a parent/caregiver lead group. Email Kerry at kerrykafafian@gmail.com with questions .

Abelone Kelley March 27, 2019 0