A Critique of the Proposed Disability Integration Act

June 27, 2019 

by Jill Barker, mother of Danny and Ian Barker 
Ann Arbor, Michigan 

The Disability Integration Act (DIA) of 2019 is a bill that has been introduced in the U.S. Senate (S. 117) and in the U.S. House of Representatives (H.R. 555) “to prohibit discrimination against individuals with disabilities who need long-term services and supports, and for other purposes.” Discrimination on the basis of disability is already prohibited under numerous laws, regulations, and court decisions going back to the 1970’s. It is the “other purposes” of the proposed law that cause alarm, especially when overly prescriptive policies override the judgment of individuals and their families in determining the needs of people with disabilities. 

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. 

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. 

The DIA violates existing law, in that it specifically states that it would eliminate institutions (pp. 21 & 32-33) and thus restrict a State’s ability to maintain a range of options for the care and treatment of people with a diversity of disabilities: 

• "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)

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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]

The True Meaning of the U.S. Supreme Court Olmstead Decision

20TH ANNIVERSARY OF OLMSTEAD from Rebecca Japko on Vimeo.

Together For Choice

June 25th, 2019 

Together For Choice (TFC) is an advocacy organization based in Chicago but with members from all over the country. According to its Website,

"Together for Choice was organized by providers and families across the country seeking to enhance the right of individuals with developmental disabilities to choose where to live and how to spend their days. We stand for the proposition that individuals with developmental disabilities should have the same rights as everyone else to decide where to live, work, recreate and receive services."

CHOICE...to live a life worth living

TFC held a conference in the Fall of 2018 at Misericordia, a facility in Chicago operated by the Sisters of Mercy under the auspices of the Catholic Arch Diocese of Chicago. It is a 501(c)(3) not-for-profit corporation that is funded partly with public funds, including Medicaid, from the Illinois Department of Healthcare and Family Services, the Department of Children and Family Services and the Illinois State Board of Education in addition to funds raised through private donations.

Misericordia serves 600 people with moderate to profound disabilities, on and off campus. If you are in Chicago and have a chance to visit, it is a fine example of the variety of good quality residential and work programs that are possible for people with I/DD.

The 2018 conference hosted a wide array of speakers. You can listen and watch videos of the speakers here.

To make sense of the acronyms used in regard to people with disabilities, here is a helpful glossary from the TFC blog:

Glossary

ADA = Americans with Disabilities Act

A federal law enacted in 1990 that protects people with disabilities from discrimination.

ASD = Autism Spectrum Disorder

A developmental disability affecting communication, behavior, and social interaction. ASD has wide variation in type and severity of symptoms experienced.

AT = Assistive technology

Any item, piece of equipment, software program, or product system used to increase, maintain, or improve the functional capabilities of people with I/DD. Can be a low-technology item (e.g., communication board with fuzzy felt) or involve special computers and software.

CMS = Centers for Medicare and Medicaid Services

Part of the U.S. Department of Health and Human Services that oversees federal Medicare and Medicaid policy and states’ implementation.

DSP = Direct Support Professional

A professional who supports with people with disabilities accomplish activities of daily living.

FLSA = Fair Labor Standards Act

The law that establishes minimum wage, overtime pay, record-keeping, and standards for child labor, which pertains to full-time and part-time workers in federal, state, and local governments as well as the private sector. The 14(c) provision of the FLSA offers a certificate to employers to hire people with disabilities and pay them in proportion to their level or productivity.

HCBS = Home- and Community-Based Services

Services funded by Medicaid to provide people with I/DD, physical disabilities, and/or mental illness supports in community-integrated settings.

HHS = (U.S. Department of) Health and Human Services

The cabinet-level department that oversees social service programs including many I/DD services. The Secretary of HHS is appointed by the president and confirmed by the senate.

I/DD = Intellectual and developmental disabilities

An umbrella term describing disabilities that affect cognitive, physical, and/or emotional development. Diagnoses of I/DD are always present before age 18 and are often present from birth.

ICF/IID = Intermediate Care Facility for Individuals with Intellectual Disabilities

A residential setting funded by state Medicaid entitlements (separate from HCBS). ICF/IDDs are larger settings than typical homes and typically support people with higher support needs.

IDEA = Individuals with Disabilities Education Act

A law that allows for a free and appropriate public education to eligible children with I/DD and ensures special education and associated services to those children.

PCP = Person-centered planning

An approach to engaging with people with I/DD to help them identify their strengths and use that information to design the best plan with appropriate supports for a successful and fulfilling life.

PCPID = President’s Committee for People with Intellectual Disabilities

A committee appointed by the President to advise the White House and HHS on issues related to I/DD.

QIDP = Qualified Intellectual Disabilities Professional

A license offered through state human services departments for case management staff supporting people with I/DD

VR = Vocational rehabilitation

Services offered to people with I/DD to enable them to obtain the skills and resources needed to find and keep employment.

WOTC = Work Opportunity Tax Credit

A federal tax credit available to employers that hire individuals from certain groups who have consistently faced significant barriers to employment, including people with I/DD.

Rerun from The DD News Blog: How to complain to get what you need and want

This is a DD News blog post from 9/13/18. It seems particularly relevant in times when services are dwindling and threats abound that things will never get any better and, in fact, will probably get worse. We all need to hone our skills and not let a dysfunctional system of services for people with intellectual and developmental disabilities off the hook. The moral and practical justification for supporting people with IDD, wherever they live and receive services, has been clear for decades. The attempt by public agencies and policy makers to shed responsibility for this endeavor is an unnecessary cause of suffering and lost potential for individuals with disabilities and their families.

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In Defense of Complainers

Complainers are often seen only in a negative light - annoying pests to be avoided at all costs. But constructive change almost always begins with a complaint of some kind from a person who has been wronged or has seen mistreatment of others that offends their sense of fairness and justice.

The following is from “The View from Flyover Country: Dispatches from the Forgotten America”, by Sarah Kendzior, page 224:

“The surest way to keep a problem from being solved is to deny that problem exists. Telling people not to complain is a way of keeping social issues from being addressed. It trivializes the grievances of the vulnerable, making the burdened feel like burdens. Telling people not to complain is an act of power, a way of asserting that one’s position is more important than another one’s pain. People who say ‘stop complaining’ always have the right to stop listening. But those who complain have often been denied the right to speak.”

Sarah Kendzior is a journalist who makes her home in St. Louis, Missouri. Her collection of “Flyover Country” essays cover a broad range of topics. None of them are specifically about disability issues, but many people with disabilities and their families can identify with the people she writes about - those who have been ignored and marginalized by the mainstream of American society. 

Complaining to expose problems and bring about change is a good and noble pursuit, but the question of how to complain effectively to resolve problems for the benefit and satisfaction of a disabled individual is more complicated. Much of it will depend on your situation. All too often we allow others to complain for us. Professional advocates may be eager to step into that role, but sometimes they may have their own agenda that conflicts with the needs of the person with a disability. Sometimes advocates claim to represent us without even asking if we want their representation. Others with fancy titles and advanced degrees may be brought in to bolster our arguments, as if our own accounts of what we experience are not worthy to be heard without the validation of experts. This is not to say that specific expertise and people experienced in the workings of the systems we have to deal with are not helpful. They usually are. But at the core of any good complaint is the experience of the person who has been wronged.

Complaints that involve violations of an individual's right to be free of abuse, neglect, and exploitation can come from almost anyone and deserve immediate investigation. They are most effective when the person is filing the complaint on his or her own behalf or, when that is not possible, from someone who is knowledgeable about the individual and cares enough to follow through to see that the problem is resolved.

Points to consider when you join the ranks of the complainers:

Talk is cheap. Document in writing the basis for your complaint and your attempts to resolve the issue. Keep a notebook with you where you can write down conversations about the complaint and the responses you have received. Rather than complaining that no one ever listens to you, write down the information that you want them to hear and ask that it become part of the written record of the agency you are dealing with. It is hard to ignore written documentation.

Find out what the law says about your complaint. Look for references to the parts of law and regulations that apply specifically to your situation rather than rely on summaries. This is not as hard as it sounds once you learn that written information is available that gives you a more complete idea of the issues you are grappling with. Seek out people who can help you find what you need to know, but beware of people who wish to take over from you because they question whether your judgement is as good as theirs, even when they know next to nothing about you or your family member with a disability.

Get copies of records from the agency you are dealing with. Legal guardians, parents of minors, and the person with a disability have a right to copies of records kept by public agencies with few exceptions. Permission to see confidential records from the individual is necessary if you are not the person's legal guardian. The records will reveal information that decisions are based on. You then have the opportunity to determine whether the written records are accurate and complete. You may also find invasions of privacy with information that is irrelevant to determining the needs of the person with a disability. I remember from the old days of special education when parents could finally get their hands on school records and found out there were gossipy comments on their appearance, estimations of how wealthy or poor they were, whether they were good housekeepers, speculation on how a recent divorce was affecting their child, and other gossip unrelated to the school’s responsibility to provide an appropriate education to the child.

Get organized so that you can handle your complaint efficiently and find the information you need to determine what your next step will be in the process of resolving your complaint.

Don't Give Up! You may not get what you want immediately and you may feel like there are too many barriers to resolving a problem considering the time and effort you are putting into it. But in the meantime, you are way ahead in figuring out what makes the system of services for people with disabilities tick and what you need from it. These efforts are never wasted.

Going further with a lot of unsolicited advice is not helpful at this point. Investigating complaint, grievance, and fair hearing procedures that apply to your particular situation may be your next best step.

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Once you have established a justified and righteous complaint, you are much better prepared to go out and work with other families, people with disabilities, and organizations to improve and change policies to help others in your situation without causing harm to people whose needs may be different from your own. JRB 6/23/19

Washtenaw County CMH Board hears from families and people with developmental disabilities, 6/21/19

On 6/20/19, Kerry Kafafian, a parent who is spearheading a project called “Home Grown Community” in Washtenaw County, sent out an email encouraging families to attend the Washtenaw Community Mental Health Board meeting on 6/21/19. Earlier, Kathy Homan from the Washtenaw Association for Community Advocacy had sent out an email reporting that a CMH Board member at two CMH committee meetings had suggested that CMH tell the state that the county would no longer provide Community Living Supports (CLS) or Applied Behavior Analysis (ABA) for people with autism in order to eliminate a $10 million deficit in the CMH budget.

The DD community is mentioned infrequently at CMH Board meetings and this seemed to be a good time to let the Board know about the importance of the services needed by people with DD and their families.

The Friday 6/21/19 Board meeting was attended by 25 to 30 (in my estimation) family members and people with disabilities who spoke to the Board during an extended period for public participation. It was an amazing turnout, considering that many of the families involved are under a great deal of stress. They cannot do something as simple as grocery shopping without making arrangements to have a responsible adult caregiver available to their disabled family member. The Board meetings are held from 9:30 to 11:30 a.m., an inconvenient time, especially for people who work, making it even more difficult for families to attend. There were many people who could not make it on Friday but who nevertheless wanted to address the Board.

Some parents spoke of their children being exposed to abuse and neglect in other settings outside of their own homes and many spoke of the difficulty in hiring Medicaid-funded support staff at poverty level wages. One parent told of how the CMH system has moved the chains and bars from institutions to his home, where he cannot find staff to take care of his son with extreme behavioral difficulties. Others were very happy with the services their loved ones were receiving and said that they were life sustaining for their families and liberating for their disabled family members. They did not want the services discontinued. Parents also expressed how sleepless nights and relentless caregiving responsibilities had pushed them to the brink of exhaustion and beyond. Another called the contemplation of removing services as reckless and irresponsible and another mentioned that there was no end in sight to caregiving responsibilities for people with lifelong disabilities. Another said that using our loved ones as pawns to get more money from the state was reprehensible. 

Board members expressed appreciation for all who attended; some described their own struggles with mental illness themselves or with their family members. In response to questions, the Board said they had joined a lawsuit against drug companies that have made huge profits on selling opioids. Washtenaw County is also involved in a lawsuit against the state for chronic underfunding of services that the local CMH is mandated by law to provide. The board member who had made the suggestion to cut services to force the state to pay for them apologized for his insensitive remarks. No decisions have been made yet on how to deal with the CMH budget deficit.

Attached is a calendar showing CMH Board and committee meetings for 2019. They all include a time for public participation. Anyone can submit a written statement to the Board at any time. I do not have specific information for sending written or electronic materials to the Board, but Customer Services at 734-544-3050 or 877-779-9707 should be able to give you that information. Their hours are from 8:30 a.m. to 5 p.m.

Jill Barker
Ann Arbor, MI

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This is a definition of Community Living Supports from the Michigan Medicaid Provider Manual, a huge document (never make the mistake of trying to print the whole thing). CLS is a service provided under various Medicaid Waivers and State Plan benefits for people with disabilities:

"Community Living Supports (CLS) facilitate an individual’s independence, productivity, and promote inclusion and participation. The supports can be provided in the beneficiary’s residence (licensed facility, family home, own home or apartment) and in community settings (including, but not limited to, libraries, city pools, camps, etc.), and may not supplant other waiver or state plan covered services (e.g., out-of-home nonvocational habilitation, Home Help Program, personal care in specialized residential, respite)."

2019 Calendar of CMH Board and Committee Meetings

WCCMH Board Members

More Choices for people with IDD and their families in Washtenaw County, Michigan

This is a note from Becky Altschuler, another resourceful parent who is creating a program for adults who are not candidates for vocational programs but need a variety of community activities:

Due to the need for high quality day programs for young adults with disabilities, a group of parents is starting a new program in Ann Arbor. This program is intended for young adults who've aged out of the school system (recently or not so recently), and are not candidates for vocational programs. If space is available, we'll also welcome young adult students during the summer break. 

Our goals for this program are to get our kids out in the community and to involve them in a variety of activities. We will meet Wednesdays and Fridays staring June 19, from 9 am - 4 pm at the Ann Arbor Center for Independent Living. 

If you'd like more information about whether this program is a fit for your son or daughter please contact me at A2becky40@gmail.com. We also welcome anyone who wants to work with us to create meaningful options for our kids in adulthood.

A "Home Grown Community" in Washtenaw County, Michigan

This is a note from Kerry Kafafian, about a new organization that intends to build a Home Grown Community (HGC) in Washtenaw County. 

Home Grown Community (HGC) has accomplished a lot over the last few months. The organization has:

• Incorporated in the State of Michigan as a Nonprofit Corporation.
• Named a Board of Directors.
• Visited other housing communities including Benjamin's Hope and St. Louis Center and will visit Bitter Sweet Farms this summer
• Finished a Business plan with a construction and operating budget 
• Applied to the IRS for 501(c) 3 tax exempt status  
• Built strong connections with several IDD groups and service providers and law makers
• The Web site will go live soon 

Home Grown Community (HGC) is inspired by Camphill and Innisfree Villages, as a voluntary community with adults with intellectual and developmental disabilities. HCG is dedicated to providing a Lifesharing home and learning environment in an atmosphere of beauty warmth, and respectfulness. All community members are valued, and all are encouraged to explore and contribute to a meaningful and challenging life.

Our location will be on the outskirts of a town in Washtenaw County, MI. Roughly 100 acres will hold a farm, Community Center, Craft House, 6-10 homes with about 10 bedrooms each (4 for Residents and 6 for Coworkers) and there will be a cafe/coffee shop along the main road.

For a great example of an over 30 year old lifesharing community see Innisfree Village. 

Here are some good Videos to view and share with others: 

Benjamin's Hope in Holland, Michigan

Innisfree Village in Crozet, Virginia

Camphill Village, New York