June 27, 2019
by Jill Barker, mother of Danny and Ian Barker
Ann Arbor, Michigan
Ann Arbor, Michigan
The DIA attempts to promote and impose an ideology of full inclusion on all people with disabilities. It envisions “full integration in the community” for everyone, regardless of their need for specialized treatment and care or their preferences for how and where services are delivered. Considering the full range of need and the diversity of people with disabilities, most may desire “full integration in the community”, but for some, a fully integrated life in the community may not be possible or desirable.
In the disability community, there are fierce debates over how and where people with disabilities should live and receive services. The DIA does not reflect the full range of perspectives on these issues, especially my own views and those of many others who have family members with severe and profound intellectual disabilities. Missing from the debate, as far as this piece of legislation is concerned, are people with disabilities and their families who rely on and benefit from the programs, services, and residential options that this bill would eventually eliminate.
The advocacy groups that worked on this legislation are ideologically opposed to institutions and all other congregate residential or work settings, regardless of the needs or preferences of individuals and their families.
The advocacy groups that worked on this legislation are ideologically opposed to institutions and all other congregate residential or work settings, regardless of the needs or preferences of individuals and their families.
Let me introduce you to my sons, Danny and Ian
Danny is 42 years old and has severe cerebral palsy, profound intellectual disabilities, 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 disabilities 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.
My son Ian is 34 years old and had problems at birth similar to those of his brother. He has disabilities as profound as Danny’s 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, but the continued availability of that care is precarious due to our chronically underfunded mental health system. Their direct care workers perform difficult jobs that are undervalued and often unrecognized for their importance. My sons’ need for 24/7 care and supervision is dependent on the group home receiving adequate funding and support.
Direct harmful effects of the DIA on Danny and Ian
The DIA arbitrarily proposes to redefine Home and Community-Based Services (HCBS) so that my sons’ group home would no longer be considered "Community-Based". [See the DIA, page 9, where the definition of a community-based dwelling “…is a group or shared residence…in which no more than 4 unrelated individuals with an LTSS disability reside..” ] If adopted, there is no reason to think that HCBS Medicaid funds would continue to support their group home. It would increase the instability of the current system of care, increase costs, and drive service providers out of business, because the four-person limit denies possible economies of scale to control operating costs.
General harmful effects of the DIA
The effect of the “community integration for all” approach in the DIA will result in making specialized services difficult to access. People with disabilities will have to justify, not just that a service is appropriate to their needs, but that it is also used by people who are not disabled. If one receives dental services at a clinic that specializes in serving the needs of people with intellectual and behavioral disabilities, it should not be necessary to prove it is integrated by showing that people without those problems also use the clinic’s services.
The DIA imposes a goal of independence on many individuals for whom a limited degree of independence or none at all may ultimately be achievable. No federal law should impose or assume goals that do not reflect individual abilities and needs. [On page 11 of the DIA, the definition of “an individual with an LTSS disability” makes the assumption that an independent life is achievable regardless of the person’s disabilities.]
Under the DIA, decisions for how and where people with disabilities live and receive services will be imposed by federal policy rather than allowing the judgment and experience of people with disabilities and their families, and others who know them, to be the basis of those decisions.
The proposed DIA promotes the notion that money will be ”saved” by eliminating institutions (Intermediate Care Facilities for Individuals with Intellectual Disabilities - ICFs/IID), skilled nursing facilities, group homes serving more than four individuals, and other congregate settings. The presumed savings would enable the states to expand services to more people in community settings, but at the expense of those with the greatest needs. Despite the shift of Medicaid funding to community settings from institutions, waiting lists have soared and the “savings” to serve more people with disabilities have not materialized. According to the UCP Case for Inclusion 2019, page 9, spending doubled on Home and Community based services from 2006 to 2016, the number of people living in larger state institutions was cut in half, while waiting lists for services tripled.
Non-existent and poor quality services 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.
The DIA, the ADA, and Olmstead
The Americans with Disabilities Act regulations on discrimination state 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 DIA uses the phrase, “most integrated setting” five times and each time it leaves off the phrase “…appropriate to the needs of qualified individuals with disabilities”. Why? Does consideration of the appropriateness of a setting to the needs of the individual conflict with the ideology of “full inclusion” and “community for all”?
Under Findings and Purposes, the DIA assumes that placement in an institution such as an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID) or other congregate setting of more than four people with disabilities is inherently discriminatory. This is not consistent with the ADA or the U.S. Supreme Court Olmstead decision interpreting the ADA:
- 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.
- "Unjustified isolation, we hold, is properly regarded as discrimination based on disability. But we recognize, as well, the States' need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities, and the States' obligation to administer services with an even hand." (Olmstead v. L. C., 527 U.S. 581, at 597)
- “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it." (Olmstead v. L. C., 527 U.S. 581, at 601-602)
Let’s look before we leap. Legislation that is this sweeping and that affects so many vulnerable people who are already at the mercy of others who would exploit them for their own purposes, should not go forward without a full analysis of all its intended and unintended consequences. Most importantly, for these most vulnerable people, FIRST, DO NO HARM.
[This post was updated for clarity on 7/2/19, but the substance remains the same. JRB]
3 comments:
Excellent critique. Individuals with DD/ID should not be subject to 1 option only, and no choices. FAPE is based on individual needs and facilitated by choices and modifications. ADA must follow suit.
Year after year after year, decade after decade after decade, the DD community cannot and/or will not face up to the real-world consequences DD. They just cannot face up to reality.
They think that they can compensate - by having the individual live and work in the community and by providng whatever the supports the individual needs to succeed. Indeed, there are legitimate success stories - many of them.
But what about the legitimate failures? Those whose disability is so extreme that there is little that can be done. The ones who, no matter how hard we try to help them, are not going to be able to meet the DD community's lofty expectations - inclusion, empowerment, employment, independence.
In the 1963 motion picture, "A Child is Waiting" (starring Burt Lancaster and Judy Garland), there is a scene where one father is counselling another father that he must accept his son AS HE IS.
Five and a half decades later, the DD community still doesn't want to do that. Instead, they have turned their backs on anyone who fails to conform to their philosophical view. And anyone who speaks up is liable to be shouted down.
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