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

Labeling Group Homes as "mini institutions" restricts choice and discourages innovation

This is an article from VOR, a Voice Of Reason, published in the Spring 2020 edition of The VOR Voice .

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Homes for Life 

By Micki Edelsohn

On a lovely spring day in 1972, I held my youngest son Robert for the first time not knowing that this little baby would change the trajectory of my life. Birth injuries that occurred during that difficult delivery resulted in Robert suffering significant intellectual disabilities. As the extent of these disabilities slowly unfolded, I knew that Robert’s challenges would be different from his older brother and yet my goals for him were the same. Robert would get the best education possible to reach his full potential and someday hold a job, live in his own home and enjoy life in his community.

In 1989 I had a small dream. I would find a way to raise the funds to build a group home where Robert could live with his peers when he completed his schooling. There were a few group homes in Delaware; but my vision of what a group home should look like was quite different! It should be in a beautiful, safe community near all appropriate amenities. When my first group home was completed other families liked what they saw, and the State of Delaware asked for more. My husband Lanny and I then established Homes For Life Foundation and, thanks to the generous and ongoing support of the Delaware community and friends around the country as well as corporations and foundations, we have built and furnished 25 debt free group homes and purchased two condos. Today one hundred and four deserving men and women now have a safe and comfortable place to live and enjoy life. Their intellectual disabilities range from high functioning with drop-in support to high needs with 24/7 awake staff.

It didn’t take long to appreciate that building the homes was the easy part. Finding caring, dedicated and competent staff would turn out to be the difficult part. Ironically in the 1990’s, as I was fundraising and building four-person group homes, the State of Delaware approached The Arc of Delaware requesting that they become a landlord by providing homes for those with IDD. I was a board member of the Arc of Delaware at the time. When the Homes For Life homes began to multiply we recognized that as an all-volunteer non-profit organization with no staff to provide property management, we voted to deed each property to The Arc of Delaware for $1.00. The organizational arrangement was as follows: 

• Homes For Life would build and furnish the homes.
• Homes For Life then deeded the homes to the Arc of Delaware for $1. The Arc became the landlord responsible for upkeep of the homes, including a maintenance reserve fund.
• The State of Delaware contracted with provider agencies to support the residents living in the homes and compensate the agencies according to the acuity of the disability of the residents in the homes.
• The residents in the homes would always have the right to change provider agencies if they felt that their needs were not met.

When the last home was donated in 2009 the value of the homes was approximately 10 million dollars. Each home was HCBS waivered. Little by little I began to understand CMS and the Medicaid system. The Medicaid funds are the “lion’s share” of lifetime support due to the costs of direct care for persons with IDD. Each home is only as good as the Direct Support Professionals and the managers who, despite inadequate wages, make a house a home.

It was during this time, that I met many other Delawareans whose adult family members were longing for a more independent life. I also became acquainted with The Mary Campbell Center in Wilmington, a 55 bed ICF with amazing amenities for those with higher needs and medical complexities. I found others online like VOR members Tamie Hopp and Jill Barker, and I met people from across the country who shared my views that a “one size fits all” solution would not be sustainable.

In 2011, I was appointed to the President’s Committee for People with Intellectual Disabilities (PCPID). This position gave me more insight into the way services were being allocated, and the ideological direction the agencies administering DD services were taking. At that time CMS began reviewing and changing HCBS regulations. The Administration on Aging and the Administration on Disabilities were combined into the Administration for Community Living (ACL), taking the focus from the needs of the individual to a determination to support a single service model of “community living.” The push to move people from ICFs was well underway, and now various government agencies were shifting again and urging families to keep their loved ones in the family home as a new “alternative.”

I had to accept the sad reality that not only were ICF’s no longer being presented as an option by most states’ departments of disability services, but HCBS waiver models were also being deemed congregate, even 4 person homes. By 2010 our Delaware DDS director was no longer requesting the group home model from Homes For Life. Our group homes were now referred to as “mini-institutions.”

So today, as Robert turns 48, I am no longer a “home builder” but an activist working to ensure that all voices are heard and all housing and work opportunities are valued and receive the funding streams needed to meet all people with IDD, especially those with the highest needs. Those with IDD, regardless of severity, have the right to choose where and with whom they would like to live whether it be in an ICF, a group home, an intentional community, an apartment, a farmstead or in their own home with their family members.

When I first started this journey, I never imagined where it would take me or what wonderful people I would meet along the way. For me, life’s great irony is learning that, although we start out by simply wanting to care and provide for our own very special children, we discover that to do so we must embrace every child.

Michigan groups sue to "Stop the Hamster Wheel" - Medicaid hearings that are never resolved due to lack of adequate funding

A press release from three legal advocacy groups, Including Michigan Protection and Advocacy Services (MPAS), alleges "Systematic Due Process Violations in Michigan Medicaid Program":

...Lansing, MI – Medicaid recipients have long had rights to “fair hearings” to challenge actions affecting their benefits. According to a new lawsuit, however, recipients in Michigan cannot get relief from those hearings, even when they win.

The suit, filed by attorneys for Michigan Protection & Advocacy Service, Inc. (MPAS), the National Center for Law and Economic Justice (NCLEJ) and Legal Services of South Central Michigan (LSSCM), says that the administrative law judges (ALJs) presiding over fair hearings lack the power to order the agency to grant the benefits it had wrongfully denied. All they can do is send the case back to the agency to “reassess” the recipient. And when the agency comes back with the same decision on reassessment—as it often does—all the recipient can do is ask for another fair hearing, where the same thing will happen again. This is the Michigan Medicaid “Hamster Wheel”: recipients run and they run and they run, but they never get anywhere.

Named Plaintiff Kevin Wiesner lives with various disabilities, and he relies on Medicaid-funded community living supports (CLS) to stay in the community. In 2019, he challenged the CLS budget provided by Washtenaw County Community Mental Health (WCCMH), and the ALJ held in his favor in every respect: The budget was insufficient to meet Kevin’s medical needs, it had been insufficient since at least 2015, and at least a certain, specific amount was required to make it sufficient. But the ALJ did not—because he said he could not—order a budget of that amount. Instead, he told WCCMH to “reassess” Mr. Wiesner’s needs. To no one’s surprise, WCCMH’s “reassessment” ignored the ALJ’s determination and denied Mr. Wiesner any increase at all.

“For more than 50 years, the Constitution and federal statutes have guaranteed public benefit recipients the right to an impartial determination of their benefits,” said Ed Krugman, a senior attorney at NCLEJ, “The Michigan Hamster Wheel makes a mockery of that right. Kevin Wiesner fought for the services he needs, and he won, but he got precisely nothing. That is a travesty.”

“The Medicaid Fair Hearing System is supposed to give recipients the right to challenge actions that negatively affect their benefits,” said Kyle Williams, legal director for MPAS. “If administrative law judges are only allowed to order reassessments, they can never win those challenges, because the reassessment decision is ultimately in the hands of the agency that took the negative action in the first place.”

Nick Gable, attorney for LSSCM, offered a similar thought. “The Medicaid fair hearing “Hamster Wheel” has been a problem for years, to the point that appeals challenging personal care or home and community-based support services denials are rendered futile. A legal challenge to the Hamster Wheel is overdue.”

The suit names WCCMH, Community Mental Health Partnership of Southeast Michigan, their directors, and Michigan Department of Health and Human Services Director Robert Gordon as defendants. The requested relief seeks to end the practice of ALJs remanding cases without ordering specific relief for Medicaid recipients.

Michigan Protection and 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 disabilities in Michigan.
www.mpas.org

Since 1965, the National Center for Law and Economic Justice (NCLEJ) has worked with low-income families, individuals, communities, and a wide range of organizations to advance the cause of economic justice through litigation, policy work, and support of grassroots organizing around the country.
www.nclej.org

Legal Services of South Central Michigan provides free legal advice and representation to low-income individuals, families, and older adults.
www.lsscm.org

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For more information, contact:

Mark McWilliams
mmcwilliams@mpas.org

or Edward P. Krugman

krugman@nclej.org

Kerry Kafafian [kerrykafafian@gmail.com ], Kevin's mom, is also willing to provide more information about the lawsuit.

Michigan: Radical proposals to change Medicaid services for IDD put our loved one's right to services at risk

This is from One Voice – A Michigan Parent/Family advocacy organization in support of individuals with Intellectual and Developmental Disabilities. 

Proposals from the Michigan Department of Health and Human Services (MDHHS) are not much different than the attempts by the previous administration to shift Medicaid funding away from Community Mental Health agencies to Medicaid Health Plans and to privatize services. Medicaid Health Plans would like to be in control of the Medicaid budget for people with developmental and other disabilities, but they have little experience with providing the social services, residential services, and other specialized programs necessary for the survival of the IDD population. 

Most disturbing to me is the desire to base services on the Supports Intensity Scale (SIS) questionnaire. Years ago, the state DHHS clarified that this assessment tool is not appropriate in all cases: “The SIS should be used to enhance and support the person-centered planning process. As with all assessments, the SIS is voluntary and should not be tied to determinations of medical necessity and the authorization of behavioral health services. Supports and services cannot be denied, reduced or discontinued if a consumer and/or guardian refuse to cooperate with the assessment process.” 

For my sons, who are profoundly intellectually and physically disabled, the SIS assessment misses the boat entirely. For one thing, it assumes that the only worthy goal is to provide supports so that everyone with IDD can live in the community just like everyone else who is not disabled. I can assure you that for my sons, "living just like everyone else", is a fantasy. Helping them to have a quality of life worth living entails acknowledging their extensive medical and physical needs that go far beyond what they are likely to ever find in "the community".

When my son Ian was assessed using the SIS at the age of 30, one of the questions asked was what supports are necessary to allow Ian to "date" like a typical 30-year old man. He cannot walk, talk, or do anything without total assistance. He is nevertheless a charming, lovely man, but we will never know what he thinks about "dating" or anything else in any specific way. An answer that indicated that "dating" might not be possible was not allowed. Indulging this fantastical way of thinking does not help Ian. Acknowledging that people with IDD have a wide spectrum of need and allowing for individual differences by providing a full array of services and residential options will help.

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Provided by One Voice –A Michigan Parent/Family advocacy organization in support of individuals with Intellectual and Developmental Disabilities Email us at: onevoicemi@gmail.com Bob Pierce, Chair of One Voice

ACT NOW To save our loved one’s supports and right to services. 

Radical changes are being proposed at the State level for Medicaid Services for our I/DD family members. Extraordinarily incomplete detailed information has been made available to the public. The announced timeline is to have the changes implemented in 2022! Here is a summary of our understanding and take on the issue. 

 MDHHS is moving toward a model that calls for Specialty Integrated Plans that combine behavioral and physical health plans under one umbrella that appears to most likely place Medicaid under private control.

Terms like “Most things stay the same” and “Ability to pick your plan (including a public-led option if you want)” are in Director Gordon’s public sales pitch for this revolutionary change.

The key to changes is the part about opening up the Mental Health Code. The Code currently says services are based on the Person Centered Plan (PCP). That Section will likely be removed, and services will be based on a Supports Intensity Scale (SIS) questionnaire. Questions can be misleading, and numbers manipulated to limit what services are legally protected. We cannot let the SIS dictate the needs of our loved ones.

Nowhere has anyone publicly detailed what is failing in our existing systems or how to improve these shortcomings. It is our belief that this is simply a plan to eliminate financial risk for the state, reduce support and services for our I/DD family and ultimately privatize Community Mental Health services.

Other states have implemented similar programs. Here are a few samples of press headlines that reflect the “success” of these changes:

North Carolina gets a “F” on how equally it treats mental and physical health issues – North Carolina Health News 1/15/19

Medicaid changes hit mental health services in state; payment cuts cited as providers shut – Arkansas Democrat Gazette 12/9/2019 

We must send a loud and clear message to Governor Gretchen Whitmer - NO Specialty Integrated Plans (SIPs) and NO opening of the Mental Health Code! Slow down this process now!! 

Please contact the Governor now! Time is of the essence. State Representatives, State Senators and your local County Commissioners need to hear our voices.

Governor Gretchen Whitmer

P.O. Box 30013
Lansing, Michigan 48909

517-373-3400
517-335-7858 (Constituent Services)

Governor Whitmer
https://govenorsoffice@mich.gov https://MDHHS-futureofbh@michigan.gov State Senator https://www.senate.michigan.gov/fysbyaddress.html

State Representative
https://www.house.mi.gov/mhrpublic/frmFindaRep.aspx

Washtenaw County Board of Commissioners
https://gisappsecure.ewashtenaw.org/public/BOC/

References:

https://www.arkansasonline.com/news/2019/dec/09/medicaid-changes-hit-mental-health-serv/

https://www.northcarolinahealthnews.org/2019/01/15/north-carolina-gets-a-f-on-how-equally-it-treatsmental-and-physical-health-issues/

Press release announcing the plan.
https://www.michigan.gov/som/0,4669,7-192-29942_34762-513879--,00.html

MDHHS Director Gordon’s slide presentation 

http://www.house.mi.gov/hfa/PDF/HealthandHumanServices/ DHHS_Subcmte_Testimony_MI_Behavioral_Health_System_New_Approach_12-4-19.pdf 

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See also, 

"Families providers ask tough questions on plans to integrate Medicaid mental health" by Jay Greene from Crain's Detroit

The DD News blog: Managed care and privatization create a crisis in Iowa

Wayne County, MI, Advocates for IDD: Workshops on Medicaid, employment, and housing

This is an announcement of events in Wayne County, Michigan, from parent/advocate Ed Diegel:

During the last several election cycles I heard only Barack Obama mention that in addition to providing Medical services to the needy, Medicaid also provides funding for the intellectually and developmentally disabled, the mentally ill and persons suffering with substance abuse. Furthermore, in my state district during the 2018 election,  the Michigan Republican Party flooded the district with fliers suggesting that extending Medicaid would only extend Medicaid fraud, inferring in effect that all Medicaid recipients are lazy and fraudulent. 

My friends, it is you and I who are responsible for allowing politicians and our friends and neighbors to harbor the idea that Medicaid is BAD. We need to do a much better job of being honest and effective and speaking out about the tremendous benefit to our individuals and communities that this program delivers. In addition there are issues being discussed in Lansing and Washington that have potentially severe impacts across the board and specifically on funding and on group home and workshop settings that need our attention.

Community Opportunity Center together with STEP and MALA is sponsoring the legislative issues and advocacy training workshop described below. Persons ready to speak up are encouraged to sign up for the workshop. Position papers of current issues, tips on effective lobbying and legislator town hall and in district coffee schedules will be provided.

Two workshop dates are available. Please see the following for detail:

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You Are Encouraged To Attend A Family Advocacy Training Session

Sponsored by: Community Opportunity Center and Services to Enhance Potential

Two Sessions Offered:

February 12, 2019 5pm-8pm

February 16, 2019 10am-2pm

Location: Community Opportunity Center
14147 Farmington Rd., Livonia, MI 48154

Educating legislators about the importance of Medicaid funding and about the needs and circumstances of our loved ones is essential if we wish to influence legislation and funding sources for their benefit. Issues related to housing and employment are under review and new legislation has been created at the federal level, which may have an impact on services our loved ones receive. For this reason, COC and STEP would like to meet with interested families and other support persons to discuss these issues and create an advocacy group, which in turn can share information with local, state, and Federal legislators regarding the impact of these legislative changes. 

If you wish to attend one of these sessions and to learn more about these issues, please contact Joyce Franks at, 734-422-1020 or jfranks@cochomes.net by Friday February 8, 2019. 

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Thanks, I hope to see you at the session. It's up to us to spread the word!!! 

Ed Diegel,

Advocates for Persons with Developmental Disabilities in Wayne County.
ddadvocates@gmail.com

Solutions for Special Needs Housing

Below is an article from the Autism Housing Network that was originally written for the Special Needs Alliance in 2016. It is full of interesting links and information for families to come up with housing solutions for their disabled family members.

"I encourage families to explore options, and instead of trying to find the box to squeeze into, think of how supports can be based around the person. This will help determine the type of setting to call home and the people or places needed to maintain a happy lifestyle. This is called “person-centered planning” and, when at all possible, your loved one should be included in these discussions." ....Desiree Kameka

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Housing: A Big Piece of Puzzle for Ensuring Your Loved One’s Future

Article by: Desiree Kameka

Written on: Aug 27, 2018

This article was previously written for the Special Needs Alliance, posted here, and has been reposted on the Autism Housing Network.

As the project leader for the Autism Housing Network, I have visited over 100 residential options and social enterprises across our country. I have seen the great, the good, the bad, and the “I thought this was a good idea.” Abraham Maslow was right when he listed “shelter” as one of the foundational elements for his Hierarchy of Human Needs and Dimensions, along with air, water, food, sleep (another big one!) and clothing. A home determines physical and mental health, access to opportunities and quality of life for an individual. Housing is the anchor for a stable life.

When thinking about the future of your loved one with intellectual/developmental disabilities, you probably ask yourself if you should be focusing on finding the right service provider, building relationships, seeking employment, etc. We can invest enormous amounts of energy in pursuit of those important goals. But all that may be lost if rising rents force someone on an extremely low, fixed income, or their host family, to relocate. Or if the group home they live in must close. The greatest investment we make to ensure life stability is a home. Even when all other plans fail, loved ones still have their home.

To help families plan and understand their choices, Madison House Autism Foundation created a five-part video series called the AHN Virtual Tour of Housing and Support Options, which describes the benefits and considerations of 18 different housing and service delivery options, from traditional to emerging models. The video series will explain examples in depth, but there are four major categories to consider for legal and financial planning: 

Rely 100 percent on government support. 

Options include:

• An Intermediate Care Facility (ICF-ID), through which housing and support services are provided to eligible persons needing an institutional level of support; 
• Placing in a host family home, adult foster care or group home, with rent paid to the service provider using Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI), and support services paid for through a Medicaid waiver; 
• Securing an affordable housing voucher/unit, with a Medicaid waiver paying for support services in one’s home. 

The availability of these options is extremely limited and can fluctuate, depending on government policy and budgets. This is where members of the Special Needs Alliance can be of great help, since public assistance is often “means-tested,” and it is important to be vigilant to ensure that one remains eligible. The AHN Resource Directory has a filter for ‘Finding Public Assistance’ that can lead you to helpful links.

Invest privately in housing and access Medicaid for support services and/or arrange supportive housemates. 

This disconnects one’s service provider from their housing and provides the most control over one’s home. One could continue living in their family home, or could move into a tiny home/accessory dwelling on the same property, or another home purchased for them elsewhere. Some families combine resources in order to buy a home together. Others may purchase a home/unit in an intentionally neurodiverse cohousing or planned community. A Medicaid waiver would then be needed to pay for everyday assistance and support. Under these circumstances, one can change service providers as needed without being forced to relocate. This separation of housing and service provider is generally referred to as “consumer-controlled” housing. Renting to roommates can offer an additional income stream to help pay for living expenses, as well as offering unpaid support. 

100% private pay, tuition-based residential. 

This can be a single apartment in a big city or a campus-based setting, where one has home, work and recreational options. Tuition includes one’s housing, coordination of daily in-person support, meals, planned activities, transportation and other services. This is an option only if you can afford tuition that starts at $38,000 a year for the individual’s lifespan. It is important to think about whether or not the provider will be around for the duration of your loved one’s life or what would happen if their support needs change. You can find a list of these in the AHN Housing Directory by clicking “Private Pay” under the “Payment Options” filter.

Transitional or post-secondary programs. 

This is not a permanent solution. Instead, it’s a private pay program that intensely teaches life skills, with the goal of giving someone the training needed to live more independently in the future. It is an investment of at least $2,500 a month for the duration of the program. These can also be found in the AHN Housing Directory.

I encourage families to explore options, and instead of trying to find the box to squeeze into, think of how supports can be based around the person. This will help determine the type of setting to call home and the people or places needed to maintain a happy lifestyle. This is called “person-centered planning” and, when at all possible, your loved one should be included in these discussions.

I hope this has been a helpful introduction and has persuaded you to prioritize housing when planning for the future.

Organizations supporting a full range of services and residential options: "one size does not fit all"

The following is a letter dated 4/10/18 addressed to officials at the U.S. Department of Health and Human Services from over 60 community organizations and advocates for people with developmental and intellectual disabilities. It is in response to demands from HCBSadvocacy.org, representing 20 organizations, that would force almost all adults with intellectual and developmental disabilities (I/DD) into small, dispersed residential and vocational settings. Congregate settings that serve more than three or four people with disabilities together would generally no longer be eligible for Home and Community-Based Services (HCBS) funding – whether or not those are appropriate or desired by Medicaid Waiver recipients. [Special Medicaid waivers fund Home and Community Based Services for people with developmental and other disabilities.] HCBS is regulated by the federal Centers for Medicare and Medicaid Services (CMS).

Here are the email addresses of people who received the letter, in case others wish to follow up with their own comments:

Secretary of Health and Human Services Alex Azar: Secretary@hhs.gov

Administrator Seema Verma: Seema.Verma@cms.hhs.gov

Calder Lynch: Calder.Lynch@cms.hhs.gov

Vu Ritchie: vu.ritchie@cmas.hhs.gov

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April 10, 2018

Dear Secretary Azar, Administrator Verma and Mr. Lynch:

We are writing in response to the alarming demands for an expanded process of heightened scrutiny submitted by the Center for Public Representation and the National Health Law Program on behalf of twenty organizations (henceforth referred to as “the HCBS Advocacy Coalition”) determined to force all adults with intellectual and developmental disabilities (I/DD) into small, dispersed residential and vocational settings – whether or not those are appropriate or even desired by waiver recipients.

We applaud CMS’ desire to support adults with I/DD in community settings, and completely agree that those who want to live and work in the greater community should receive whatever services they require to succeed. However, the campaign to solely fund small, dispersed, “integrated” settings is just as dangerous, paternalistic, and ideological as the forcible institutionalization of the mid-20th century to which it responds. We reiterate, because this one point should be sufficient to end this debate, that this is an ideological crusade rather than an evidence-based agenda: although the aforementioned advocates have long maintained that “studies” show that small, dispersed settings are best for adults with I/DD, an independent review of the literature by Dr. David Mandell, ScD., Director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, found that, although “decisions about [residential] care may have the most profound effect on well-being and happiness…our decision-making regarding which types of placements to pay for and prioritize is based on values rather than data.”

Not only is there no scientific evidence behind the one-size-fits-all model of residential and vocational supports, but the lack of more intensive, structured settings for our most impaired adults has resulted in catastrophic consequences. Mandell notes that “today, media exposés of abuses in community settings rival those of psychiatric hospitals a generation before.” Recent investigations of group homes in New York, Chicago and Philadelphia found rampant abuse and neglect in small, dispersed settings that, as Mandell reports, “often are not up for the task of caring for individuals with more profound impairments.” Undoubtedly, it was his fear of exactly these outcomes that motivated Justice Anthony Kennedy to warn, in his concurring opinion to the 1999 Olmstead decision, “It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”

But this debate isn’t just about those with the most severe intellectual and developmental disabilities. Many Americans choose to live with peers in retirement, religious and ethnic communities – there’s even an “adult dorm” in Syracuse for lonely Millennials. It is only when adults with I/DD choose to live and work with their peers that opponents claim these settings are “isolating” and “segregating” – resulting in the heartbreaking irony that adults with I/DD represent the only population in this country denied the civil right to decide where and with whom they live, and that this outcome is largely due to the influence of groups allegedly concerned with preserving the rights of the disabled. It is the height of arrogance for the HCBS Advocacy Coalition to insist it knows what’s best, even as applications pile up for new projects like First Place in Arizona, which consists of 55 apartments for adults with autism, and the 97-unit The Arc Jacksonville Village in Florida. We encourage you to visit these communities, as well as others all over the country whose names and contact information we would be happy to provide.

On a practical level, the more elaborate process of heightened scrutiny demanded by the HCBS Advocacy Coalition would devour the time and funding of already stretched agencies. Almost two hundred thousand individuals with I/DD were on waiting lists for Medicaid long-term supports and services as of June 2015. [emphasis added] We need to foster a creative environment in which adults with I/DD and their families are encouraged to work with providers to develop the environments they want. What we absolutely do not need is a landscape dominated by even more bureaucratic obstacles.

Importantly, this vision is very much in line with the Final [Settings] Rule as it was originally articulated by CMS. It acknowledged that regulations should be more “outcome-oriented…rather than based solely on a setting’s location, geography, or physical characteristics.” Secretary Price and Administrator Verma similarly emphasized the need for choice in their March 14, 2017 letter to the states’ governors, in which they expressed their commitment “to a new era for the federal and state Medicaid partnership where states have more freedom to design programs that meet the spectrum of diverse needs of their Medicaid population.” They noted that the states “are in the best position to assess the unique needs of their respective Medicaid-eligible populations and to drive reforms that result in better health outcomes.”

It is in line with these priorities as articulated by your own agency – as well as by the ADA and the Olmstead decision – that we ask you to retract the contradictory guidance that stigmatized farmsteads, gated communities, clustered housing and, more generally, all disability-specific settings as “isolating.” Not only does Federal law support the right of choice, but the concept of person-centered planning on which our system of service delivery is based mandates that these important decisions be made exclusively by waiver recipients and their families, from the most expansive range of home and workplace settings possible.
We look forward to participating in this critical conversation. 

Correspondence may be addressed to Amy Lutz via email at amy@easifoundation.org or by mail to EASI Foundation, P.O. Box 351, Villanova, PA 19085. 

Best, 

Together for Choice (NV)

Autism Science Foundation (NY)

ACCSES (DC)

VOR (IL)

Autism New Jersey (NJ)

Madison House Autism Foundation (MD)

EASI Foundation: Ending Aggression and Self-Injury in the Developmentally Disabled (PA)

Bergen County United Way (NJ)

Advocates for Community Choice (MO)

Special Moms Network LLC (NY)

...and many more

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See the original 4/10/18 letter for complete information on references and the list of organizations signing on.

HCBSadvocacy.org

Olmstead Resources

The Federal Government's Quiet War Against Adults with Autism 

Legal Vulnerabilities of CMS’s Regulation of Home- and Community-Based “Settings”

How the feds 2014 rule restricting group settings for people with developmental disabilities is a barrier to appropriate care

“Regulations that are at odds with the purpose and letter of the law have caused unnecessary suffering to individuals with ASD and their families for too long already. Why wait longer?” - Ed Dolan 

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Ed Dolan from the Niskanen Center posted an excellent article last October, summarizing and expounding on the controversy over the 2014 federal Home and Community-Based Settings rule that attempts to restrict group settings for people with autism and other disabilities: “How Regulation Is Preventing Adults with Autism from Getting the Care They Need”, 10/16/17.

According to the HCBS rule, any group setting where services are provided to people with disabilities that resembles an “institution” is subject to “heightened scrutiny” by the federal regulatory agency CMS (the Centers for Medicare and Medicaid Services), making it less likely that the setting will be approved as a Home and Community-Based setting that may receive Medicaid funding. This is despite the fact that “institutions”, as they are strictly defined by Medicaid law, must be available to individuals eligible for their services and that that eligibility also allows the same individuals to waive their right to institutional care in favor of community settings with comparable services. Funding is then provided through “Medicaid Waivers” that allow states the flexibility to provide services in a variety of settings based on the needs and preferences of the individual. 

But the settings rule is being interpreted as a mandate for full community integration for all people with disabilities regardless of the appropriateness of care or the preferences of people with disabilities and their families. It has been used as an excuse to close programs and residential settings that serve people with more complex and severe disabilities and to thwart innovative programs that seek to create better options for people with a variety of disabilities.

Although Dolan concentrates on the autism spectrum, this article applies, as well, to people with other disabilities that present a range of needs that can only be met by states providing a full range of residential, work settings, day programs, and recreational and other services that meet the needs of this diverse population. 

Here are some excerpts from Dolan’s article:

The deinstitutionalization of people with mental illness did not go well for many people released from psychiatric facilities:

“For some, it resulted in ‘transinstitutionalization’ to prisons, homeless shelters, and emergency rooms. For others, it has meant living on the street…The situation of people with ASD is somewhat different, because their transition typically begins not from an institution, but from their families. Still, as we will see, they, together with their parents and guardians, find the same challenges in finding an appropriate community or institutional setting for treatment.”

The misinterpretation of the 1999 U.S. Supreme Court Olmstead decision:

“…From that date, institutional care would no longer be the one-size-fits all solution for the care of people with intellectual disabilities. In the years since, however, the federal government – acting through the Department of Justice (DOJ), the Administration on Intellectual and Developmental Disabilities, the Centers for Medicare & Medicaid Services (CMS), and the National Council on Disability – has interpreted Olmstead in a way that many think has turned the decision on its head.”

Quoting from the opinion of Justice Kennedy in Olmstead, “It would be unreasonable, it would be a tragic event, then, were the American with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision. … In light of these concerns, if the principle of liability announced by the Court is not applied with caution and circumspection, States may be pressured into attempting compliance on the cheap, placing marginal patients into integrated settings devoid of the services and attention necessary for their condition.” (Olmstead at 610).

Integration for all?

“What actually happens to such people, as adults, under the integration mandate? Sorry to say, they all do not live happily ever after, bagging groceries during the day, watching TV at night, and visiting the zoo with their group-home pals on the weekend. In reality, they often cannot find small group homes that will admit them. If they do get admitted, they risk being thrown out due to inappropriate and sometimes violent behavior, or because of the inability of staff to see to their needs while also keeping up with those of other residents under a 1:4 staffing ratio.”

Suggestions that adults with ASD remain at home with their parents:

“And what happens if Mom can’t deal with the frustrated and angry outbursts of 180-pound, 20-year-old Jimmy as easily as she did when he was a toddler? What if she is injured while trying to do so? What if Jimmy accidentally hurts a stranger while he and Mom are out shopping? Situations like that trigger 911 calls. Those, in turn, as Escher points out, often degenerate into a cycle of emergency room visits due to aggressive outbursts, hospitalizations under restraint or sedation, incarceration, crisis care placement, and nursing homes. Such measures can cost much more than appropriately staffed intermediate care options and do nothing to improve the patient’s welfare.”

“…Those who really want care for all might do better to shift the rhetorical focus to appropriate care and diversity of options. The goal should be to make it clear, to people who do not have close personal experience with ASD, that the breadth of the autism spectrum defies a one-size-fits-all solution.”

Broadening the coalition:

“It should not be hard to do so. After all, adult autism care is not an inherently partisan issue. ASD strikes without regard to parents’ political views. But drawing attention to the problems posed by regulators’ narrow interpretations of Olmstead may require changing the narrative.”

“Backers of current policy have seized the rhetorical high ground with their slogan of ‘community integration for all.’ Liberals are drawn in by the words ‘community’ and ‘integration,’ while (as Justice Kennedy warned) conservatives are easily sold on small group homes and parental custody as ways of providing care ‘on the cheap.’ But there are other ways to frame the policy debate.”

“Above all, the campaign for appropriate care and diverse options for adults with ASD should emphasize that such is the law, now. ASD advocates are not asking Congress to pass new legislation. They are not asking the Supreme Court to issue new interpretations of existing law. The Olmstead decision already explicitly recognizes the 'need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities.' Regulations that are at odds with the purpose and letter of the law have caused unnecessary suffering to individuals with ASD and their families for too long already. Why wait longer? “

Indeed. Read the full article here.

See also: 

VOR Olmstead Resources

VOR Comments to the U.S. Department of Justice on Regulatory Reform

"Who Decides Where Autistic Adults Live?" by Amy Lutz 5/26/15

"The Federal Government’s Quiet War Against Adults with Autism" by Jill Escher, 4/19/16