2023 Disability Policy Webinar Series from the ARC Michigan

The ARC Michigan is sponsoring a two-part Webinar on Disability Policy 2023. The first session was held on June 9, 2023. The second session is scheduled for Friday, June 16, 2023. A recording of the Webinar and written handouts are available for the first session. A recording and handouts for the second session will be available after Friday, 6/16/23.

During the first session, Emily Henderson, Government Affairs Consultant, gave a broad overview of state issues and a rundown of who is who in state government. David Goldfarb covered federal policy and issues regarding Long-Term Supports and Services. The second session focuses more on Home and Community Based Services and the federal settings rule.

Although I disagree with some of the policies that the ARC Michigan promotes, I found the Webinar to have plenty of useful information and food for thought.

June 9, 2023
9:00am – 10:00am

Emily Henderson, 
Government Affairs Consultant
McCall Hamilton Advocacy
& Public Affairs

Emily Henderson is a government affairs consultant at McCall Hamilton, Lansing’s only all-female lobbying firm. Following graduation from Michigan State University’s James Madison College, Emily joined the team and began working closely on state legislative and regulatory health and human services issues as well as grassroots and coalition advocacy.

In this presentation, Emily will discuss Michigan’s new political landscape and provide an advocacy update on all of the items the Arc Michigan is following in Lansing. Emily will also share what it means to be an effective advocate and how to connect with your legislators.
 
10:30am – 11:30am

David Goldfarb
, Director of Long-Term Supports and Services Policy
The Arc of the United States

David Goldfarb is The Arc of the United States’ Director of Long-Term Supports and Services Policy. Prior to joining The Arc, he spent nearly 8 years at the National Academy of Elder Law Attorn eys (NAELA), where he oversaw NAELA’s advocacy initiatives. He currently co-chairs the Disability and Aging Collaborative and the Consortium for Constituents with Disabilities (CCD) Financial Security & Poverty Task Force. He began his public policy career as the Economic Policy Fellow for Senator Bill Nelson of Florida.
 
June 16, 2023
9:00am – 10:00am

Belinda Hawks, 
Director of Home and Community Based Services
& Lyndia Deromedi
, Manager of Federal Compliance Section, Division of Adult Home & Community Based Services, Behavioral and Physical Health and Aging Services Administration 

Belinda Hawks has given 30 years to working in the Michigan Behavioral Health system as a provider of services, in a community mental health organization, and the last 9 years at the state in the Bureau of Specialty Behavioral Health Services.

She will provide us with updates from MDHHS – Behavioral Health on Conflict Free Access and Planning and Implementation of the Home and Community Based Services Rule.

Lyndia Deromedi is the manager of the Federal Compliance Section in the Adult Home and Community Based Services Division and has been in this role for almost 3 years.

The Federal Compliance Section oversees the Habilitation Supports Waiver [for people with developmental disabilities] and 1915(i)SPA services for adults receiving Medicaid behavioral health services. This includes the oversight of the site review process, person-centered planning, self-determination and the Behavioral Health Home and Community Based Services (HCBS) rule implementation. Lyndia has been working in the Michigan behavioral health system for over 25 years.

Lyndia will provide an update of the HCBS rule implementation for behavioral health services in Michigan.

Click Here for more information on Home and Community-Based Services Program Transition
 
10:30am – 11:30am

Lindsay McLaughlin & Phillip Kurdunowicz
Bureau of Children’s Coordinated Health Policy & Supports, Behavioral and Physical Health and Aging Services Administration

Links to Webinar recordings and written materials are here.

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

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

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

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Why Do Good For Some? Why Not Everyone?

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, April 9, 2019 

6:30 – 8 PM 

2144 S. State St. 

Ann Arbor, MI 

Keller-Williams offices top floor 


Show Map

 

Hosted by the Washtenaw Coalition for Community Choice (WCCC)

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

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

U.S. Department of Health and Human Services finds group home residents at risk of serious harm

In January 2018, the U.S. Department of Health and Human Services issued a report with several other agencies "to identify instances in which the State agencies that administer the State Medicaid program did not comply with Federal waiver and State requirements for reporting and monitoring critical incidents involving Medicaid beneficiaries with developmental disabilities who reside in group homes." [page 3 of the Report] The Federal waiver refers to Home and Community Based Services (HCBS) that are provided to people with developmental and intellectual disabilities who live in community settings rather than in institutions such as Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID). Although blanket assertions are often made that living in community settings is superior in every way to living in an ICF/IID, the safety and oversight of community group home settings are
 being questioned in this report. 

The following is a summary of the report with comments from VOR, a national nonprofit organizations that advocates for high quality care and human rights for all people with intellectual and developmental disabilities. Many VOR members have family members who are residents of ICFs/IID or have needs similar to this population.

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Joint Report from U.S. Department of Health and Human Services’ Office of Inspector General (OIG), Administration for Community Living (ACL), and Office for Civil Rights (OCR): 

[This was published in the 2018 Spring edition of the VOR print newsletter , The Voice.]

In January of 2018. three agencies operated by the U.S. Department of Health and Human Services, acknowledged systemic shortcomings in protecting residents of HCBS waiver group homes from incidents of abuse and neglect. The Office of the Inspector General (OIG) determined that up to 99 percent of these critical incidents were not reported to the appropriate law enforcement or state agencies as required. The report stated, “Group Home beneficiaries are at risk of serious harm. OIG found that health and safety policies and procedures were not being followed. Failure to comply with these policies and procedures left group home beneficiaries at risk of serious harm. These are not isolated incidents but a systemic problem – 49 States had media reports of health and safety problems in group homes.”

The report grew out of investigations into under-reporting of critical incidents by group home providers in Connecticut, Massachusetts, and Maine that had been conducted by the OIG in 2015. The reports found drastic under-reporting of incidents resulting in trips to the emergency room and/or hospitalizations by group home providers. Concurrent with those investigations, the Inspector General also looked into critical incident reporting by ICF’s in NY State. That investigation determined that NY’s ICF’s had an excellent record of reporting incidents, and that no actions or recommendations were necessary.

OIG highlighted under-reporting critical incidents of abuse and neglect in privately operated group homes, including “deaths, physical and sexual assaults, suicide attempts, unplanned hospitalizations, near drowning, missing persons, and serious injuries. Critical incidents requiring a minor level of review generally include suspected verbal or emotional abuse, theft, and property damage. For critical incidents that involve suspected abuse or neglect, the HCBS waiver and State regulations also require mandated reporting.” It found that in the states under study, “the State agencies did not comply with Federal waiver and State requirements for reporting and monitoring critical incidents involving Medicaid beneficiaries with developmental disabilities.”

The report identified four Compliance Oversight Components that “help ensure that beneficiary health, safety, and civil rights are adequately protected, that provider and service agencies operate under appropriate accountability mechanisms, and that public services are delivered consistent with funding expectations.”
1. Reliable incident management and investigation processes;
2. Audit protocols that ensure compliance with reporting, review, and response requirements;
3. Effective mortality reviews of unexpected deaths
4. Quality assurance mechanisms that ensure the delivery and fiscal integrity of appropriate community-based services.

In conclusion, the three agencies proposed that the Center for Medicare and Medicaid Services (CMS):
1. Encourage States to implement comprehensive compliance oversight systems for group homes, such as the Model Practices, and regularly report their findings to CMS;
2. Form a “SWAT” team to address, in a timely manner, systemic problems in State implementation of and compliance with health and safety oversight systems for group homes
3. Take immediate action in response to serious health and safety findings, for group homes using the authority under 42 CFR § 441.304(g).

Comments: Most families who have signed the HCBS Waiver would have had reasonable expectations that the four oversight components listed above were in place all along. The first three of these components are mandatory licensing requirements of Intermediate Care Facilities. As for the “SWAT” teams, isn’t that the job that has been expected of Protection and Advocacy agencies in each state? If not, then what is expected of them by HHS and CMS? And why do these agencies tell us that our loved ones can receive the same level of care in group homes that they receive in ICF’s, and encourage us to leave the ICF’s, when they know that these problems remain unchecked in the HCBS waiver system?

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See also, "Feds Urge Steps To Make Group Homes Safer" by Shaun Heasley, Disability Scoop, 6/29/18. 

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

*********************************************

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”

A Glossary of Terms for Understanding both Institutional Care and Home and Community-Based Services for DD

In Michigan, Home and Community-Based Services (HCBS) for people with intellectual and developmental disabilities are funded by a Medicaid HCBS Waiver called the Habilitation Supports Waiver (HSW). The HSW is meant to be a companion program with Medicaid-funded Intermediate Care Facilities for individuals with intellectual disabilities (ICFs/IID). The waiver allows the state to “waive” some Medicaid requirements to provide services to people eligible for institutional settings (including ICFs/IID) who choose to be served in community settings as long as the costs do not exceed that of institutional care. These services are available in a variety of community settings, including group homes, supported living homes, one’s own or family’s home, specialized day programs, and specialized work programs.

Although there is a great deal of pressure by some government agencies and advocacy groups to eliminate programs that provide services in group or “congregate” settings, their availability should be based on the needs and preferences of the individuals involved and not on an ideology that dismisses these programs as unnecessary or harmful to people disabilities.

The establishment of ICFs/IID in the early 1980’s was a welcome reform to the scandalous conditions in many institutions at the time. For better or for worse, Michigan has eliminated public ICFs/IID, although some individuals continue to need the level of care that can only be provided in ICFs or skilled nursing facilities. The public, including families of people with the most severe and complex disabilities, are mostly unfamiliar with the terminology related to ICFs/IID. A better grasp of the definitions used in the ICF program can result in a better understanding of both the ICF program and Home and Community-Based Services, so that people with intellectual and developmental disabilities receive the services they are entitled to in the settings that work best for them.

Recently, I came across an “ICF/IID Glossary” on a Website at the Centers for Medicare and Medicaid Services (CMS) that defines the terms that often come up when considering services and living situations.

Here are some excepts from the glossary that define terms and eligibility for services and programs:

Intellectual Disability (AAIDD)(2013)** 

An individual is determined to have an intellectual disability based on the following three criteria: intellectual functioning level (IQ) is below 70-75; significant limitations exist in adaptive skill areas; and the condition is present from childhood (defined as age 18 or less).

Intermediate Care Facility for Individuals with Intellectual Disabilities (42 CFR 435.1009)

Institution for individuals with intellectual disabilities means an institution (or distinct part of an institution) that --

1. Is primarily for the diagnosis, treatment, or rehabilitation of the intellectually disabled or persons with related conditions; and

2. Provides, in a protected residential setting, ongoing evaluation, planning, 24-hour supervision, coordination, and integration of health or rehabilitative services to help each individual function at his greatest ability.

Institution (42 CFR 435.1009)

Institution means an establishment that furnishes (in single or multiple facilities) food, shelter, and some treatment or services to four or more persons unrelated to the proprietor.

[Note: an ICF/IID can be any setting from a small group home with four residents to a larger facility that serves many people in the same location. In Medicaid law an ICF/IID is considered an institution and is funded differently than community settings such as state licensed group homes and other programs. A distinguishing characteristic of an ICF/IID is that food, shelter (housing) and treatment services are included in the cost. In community settings, funding is fragmented and all the funding streams are often not taken into account when comparing costs. For example, with my sons who live in a group home, our community mental health agency funds services in the group home but my sons pay for room and board out of their Supplemental Security Income (SSI) from the federal Social Security Administration  and food is paid for separately. Cost comparisons between group homes and ICFs do not necessarily reflect these differences and end up exaggerating the costs of institutional care.]

Persons with related conditions (42 CFR 435.1009) 

[This defines who is eligible for an ICF/IID and therefore eligible for HCBS.]

Persons with related conditions relates to individuals who have a severe, chronic disability that meets all of the following conditions:

(a) it is attributable to, (1)cerebral palsy or epilepsy or (2) any other condition, other than mental illness, found to be closely related to intellectual disability because this condition results in impairment of general intellectual functioning or adaptive behavior similar to that of intellectually disabled and requires treatment or services similar to those required for these persons, (b) it is manifested before the person reaches the age of 22, (c) it is likely to continue indefinitely (d) results in substantial functional limitations in three or more of the following areas of major life activities: (1) self care; (2) understanding and use of language; (3) learning; (4) mobility; (5) self direction; (6) capacity for independent living.

Developmental Disability(P.L. 101-496)

A severe, chronic disability of a person 5 years of age or older which:

(a) Is attributable to a mental or physical impairment or is a combination of mental and physical impairments; (b) Is manifested before the person attains age twenty-two; (c) Results in substantial functional limitations in three or more of the following areas of major life activity: (I) self care;(ii) receptive and expressed language; (iii) learning; (iv) mobility; (v) self direction; (vi) capacity for independent living; and (vii) economic self sufficiency; and (e) reflects the person's need for a combination and sequence of special, interdisciplinary or generic care, treatment or other services which are lifelong or extended duration and are individually planned and coordinated; except that such term, when applied to infants and young children (meaning individuals from birth to age 5, inclusive),who have substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities if services are not provided.

Active Treatment (42 CFR 483.440(a)) 

[This is one of the services that distinguish ICFs/IID from other programs, but these types of services are also available in the HCBS program as determined through the individual service plan.]

Refers to aggressive, consistent implementation of a program of specialized and generic training, treatment and health services. Active treatment does not include services to maintain generally independent clients who are able to function with little supervision or in the absence of a continuous active treatment program.

Components of Active Treatment:

A. Comprehensive Functional Assessment (CFR42 CFR 483.440(c)(3)). The individual's interdisciplinary team must produce accurate, comprehensive functional assessment data, within 30 days after admission, that identify all of the individual's:

• Specific developmental strengths, including individual preferences;

• Specific functional and adaptive social skills the individual needs to acquire;

• Presenting disabilities and when possible their causes; and

• Need for services without regard to their availability.

B. Individual Program Plan (IPP) (42 CFR 483.440(c)). The interdisciplinary team must prepare an IPP which includes opportunities for individual choice and self management and identifies: the discrete, measurable, criteria based objectives the individual is to achieve; and the specific individualized program of specialized and generic strategies, supports and techniques to be employed. The IPP must be directed toward the acquisition of the behaviors necessary for the individual to function with as much self-determination and independence as possible and the prevention or deceleration of regression or loss of current optimal functional status.

C. Program Implementation (42 CFR 483.440(d)). Each individual must receive a continuous active treatment program consisting of needed interventions and services in sufficient intensity and frequency to support the achievement of IPP objectives.

D. Program Documentation (42 CFR 483.440(e)). Accurate, systematic, behaviorally stated data about the individual's performance toward meeting the criteria stated in IPP objectives serves as the basis for necessary change and revision to the program.

E. Program Monitoring and Change (42 CFR 483.440(f). At least annually, the comprehensive functional assessment of each individual is reviewed by the interdisciplinary team for its relevancy and updated, as needed. The IPP is revised as appropriate.

Community Integration (The Council)*

Refers to arrangements that enable individuals to live, work, learn and play side by side in the community with people who do not have disabilities.

Assessment (The Council)*

Refers to the process of identifying an individual's specific strengths, developmental needs and need for services. This should include identification of the individual's present developmental level and health status and where possible, the cause of the disability; the expressed needs and desires of the individual and his or her family; and the environmental conditions that would facilitate or impede the individual's growth, development and performance.

The Glossary explains some of the references cited and goes into more detail about the ICF/IID program.

See also a 2014 article by Tamie Hopp, "People as Pendulums:  Institutions and People with Intellectual and Developmental Disabilities", on the history of deinstitutionalization of people with ID/DD, the predictable tragic consequences, and often willful misinterpretations of the 1999 Supreme Court Olmstead decision. 

Documents from the Michigan Home and Community-Based Medicaid Waiver Conference, 10/2017

The Michigan Association of Community Mental Health Boards (now called the Community Mental Health Association of Michigan) sponsored the 2017 Annual Home and Community-Based Waiver Conference last October. The written materials from the conference are available on the Community Mental Health Association (CMHA) Website.

NAME CHANGE: The Michigan Association of Community Mental Health Boards is changing its name - “…The Association’s new name will be the Community Mental Health Association of Michigan. This new name retains the words ‘community mental health’ to represent the association’s link to the community mental health movement that, fifty years since its genesis, is in robust and continual development. However, you will notice that the name no longer contains the word ‘Boards’. While the Association is still led by the members of the Boards of Directors of the state’s public Community Mental Health centers (CMHs) and public Prepaid Inpatient Health Plans (PIHPs) – with Board members making up 2/3 of the Association’s Member Assembly – the Michigan Mental Health Code (the state law under which the public BHIDD [Behavioral Healthcare and Intellectual/Developmental Disability services] system in Michigan is governed has not, for years, used the term ‘Board’ to describe the local and regional organizations that make up the public BHIDD system. Additionally, none of the Association’s members use the word 'Board' in their names.”

Local CMH agencies serve people with mental illness and developmental disabilities, as well as other populations needing public social, health, and behavioral services. Along with representing the Michigan Community Mental Health agencies, the CMHA represents the PIHP’s (Prepaid Inpatient Health Plans), the regional administrative agencies that, among other things, distribute Medicaid funds to local agencies.

I attended one day of the HCB Waiver conference in October and did not come close to covering all the topics offered. The CMHA has made available all the written materials for the conference sessions. In my experience, families usually find that topics that provide information on the services available in Michigan and how to access them are the most helpful to begin with. I recommend for starters the  written materials on the following topics:

• Children’s Special Health Care Services Program Overview
• Children’s Waiver Program Overview (CWP)
• Use of the Choice Voucher System in the CWP 
• Understanding the Medicaid Administrative Fair Hearings Process and New Managed Care Regulations 
• HSW Waiver Overview (Habilitation Supports Waiver for DD)
• Children’s Waiver Program – Advanced Issues 
• HSW Advanced Issues – Focus on Compliance and Quality 

I sometimes disagree with the interpretation of policies that are part of the discussion on Medicaid Waivers, but at least the written documents from the conference give families enough information to explore these topics further as well as providing state and local contacts that may be helpful in obtaining services for a DD family member.

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A quick reference to acronyms and their meanings:
 

HSW - the Habilitation Supports Waiver, the Michigan Medicaid Waiver for people with developmental disabilites

CWP - the Michigan Children's Medicaid Waiver Program

HCBS - Home and Community-Based Services

BHIDD - Behavioral Healthcare and Intellectual/Developmental Disability services system

CMH - Community Mental Health

PIHP - Prepaid Inpatient Health Plans; regional administrative agencies that distribute Medicaid funds to local agencies

Update on Medicaid Home and Community-Based Services

The final implementation of the controversial 2014 Federal Home and Community-Based Settings rule has been delayed by the Centers of Medicare and Medicaid Services (CMS) until 2022, but that has done nothing too allay the fears of many people with disabilities and their families that it may be used as an excuse to discontinue funding for needed services and programs.

State Transition Plans (STP) are important for protecting the rights of people with disabilities to appropriate services in settings of their choice that assure integration into the larger community appropriate to the needs of the individual.

Michigan has identified settings that will undergo “heightened scrutiny” to assure that they meet the conditions of the settings rule before they are finally approved or rejected for HCBS funding. There are also grounds for legal challenges to the rule and commentary that explains why the Federal rule has been so controversial.

The following are links to resources and information to better understand what is at stake in the implementation of the federal settings rule:

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HCBS Advocacy

This is a Website supported by the Association of University Centers on Disabilities (AUCD).

From here you can find information regarding your state, including State Transition Plans that have received initial or final approval from CMS. So far only five states - Tennessee, Washington, Oklahoma, Kentucky, Arkansas - and the District of Columbia have final approval for their STPs.

According to HCBS Advocacy, although implementation of the rule has been extended to 2022, the deadline for final statewide transition plan approval is still March 2019.

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The Michigan Health and Human Services Website on the “Home and Community-Based Services Program Transition”

“As the Department develops new opportunities for stakeholders to provide feedback on this project, information about these events and opportunities will be published on this webpage. If you have any questions about this project, please send an email to HCBSTransition@michigan.gov.”

“Heightened Scrutiny”:

from CMS, “Home and Community-based Setting Requirements” - Heightened Scrutiny:

“Importantly, any setting regardless of location that has the effect of isolating individuals receiving Medicaid home and community-based services (HCBS) from the broader community of individuals not receiving HCBS is also presumed to be institutional, and therefore requires information from the state to overcome that presumption and describe how the HCBS settings requirements are met. States have an obligation to identify settings that are presumed institutional. …[The] final regulation …describes the process of “heightened scrutiny” that states can use to rebut or overcome this presumption. In particular, the regulations indicate that a settings described above “will be presumed to be a setting that has the qualities of an institution unless the Secretary determines through heightened scrutiny, based on information presented by the state or other parties, that the setting does not have the qualities of an institution and that the setting does have the qualities of home and community-based settings.”

Heightened Scrutiny in Michigan: 

In Michigan: Providers have been notified if they are subject to heightened scrutiny. Family members are encouraged to ask their provider about their status with regard to state implementation of the federal rule. 

from the HHS HCBS Transition Program:

“For those providers whom the department may submit for further review by the Centers for Medicare and Medicaid (CMS) there will be a public comment period. During this time all members of the public, including family members, will have an opportunity to share their opinions about whether the setting is home and community based. These comments will be taken into consideration before the department makes the final decision regarding submission to CMS.”

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May 9, 2017 letter from CMS extending the deadline for full implementation of the settings rule:

“Extension of Transition Period for Compliance with Home and CommunityBased Settings Criteria”

“In recognition of the significance of the reform efforts underway, CMS intends to continue to work with states on their transition plans for settings that were operating before March 17, 2014 to enable states to achieve compliance with the settings criteria beyond 2019. Consistent with the preamble language, states should continue progress in assessing existing operations and identifying milestones for compliance that result in final Statewide Transition Plan approval by March 17, 2019. However, in light of the difficult and complex nature of this task, we will extend the transition period for states to demonstrate compliance with the home and community-based settings criteria until March 17, 2022 for settings in which a transition period applies. We anticipate that this additional three years will be helpful to states to ensure compliance activities are collaborative, transparent and timely.”

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From Together For Choice Blog, 11/14/17: 

TOGETHER FOR CHOICE

Together for Choice Meets with CMS Administrator Seema Verma

"Together for Choice was invited to meet with Seema Verma, CMS Administrator, on November 1, to discuss the future of Medicaid. Approximately twenty other organizations participated in this invitation only meeting. The focus of the discussion was CMS’s Settings Rule which defines what constitutes a “community” setting and is therefore eligible for Medicaid waiver funding. I was the only person at the meeting who advocated for choice. I argued that the Settings Rule should be changed to honor the choices of individuals and their families regarding where to live and spend their days and to expand residential and day programming options. All of the other participants said that they did not want any changes to the Settings Rule or the CMS guidance under the Rule.

"Administrator Verma stated that she wanted Medicaid to be beneficiary focused and to put people first. She also said that she wanted to provide the states with more flexibility on administering Medicaid programs. In fact, she said that she wanted to give states an 'unprecedented level of flexibility.' She also acknowledged that individuals with disabilities receiving Medicaid should be viewed differently from non-disabled individuals receiving Medicaid. She wants the states to be creative and innovative in developing Medicaid programs and she repeatedly said that she wants less process and more focus on outcomes. In that connection, she said that CMS will be developing a Medicaid scorecard for states…

"Brian Neale, the head of Medicaid services at CMS also spoke. He indicated a preference for revising the CMS guidance to address the unintended consequences of the Rule rather than amend the Rule.

..."We will continue to advocate for choice by following up with Administrator Verma and Director Neale. Please join our voices to preserve choice and expand quality options by joining Together for Choice. Click HERE to join."

Scott Mendel
Chairman, Together for Choice

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Misericordia’s Developmental Training Program No Longer Subject to “Heightened Scrutiny”

2/2/2017

...“In early November, Illinois issued for public comment a draft of its transition plan. The plan listed all the facilities in the state that it believed should be subject to 'heightened scrutiny.' Misericordia’s DT program was one of the facilities on the list. The reason the state gave for subjecting Misericordia’s DT program to 'heightened scrutiny' was that it was located on a campus and was close to Misericordia’s ICF/DDs. We immediately asked all of our families with a family member living in a Misericordia CILA [Community Integrated Living Arrangement] (these are the individuals receiving “waiver” funding) to submit a public comment to HFS explaining how Misericordia’s DT program does not isolate their family member from the broader community.

• We asked each family to include in its comment: all of the activities their family member engages in both on and off campus to show how full and integrated their life is. 
• We asked the families to explain that their family member was engaging in the employment opportunities and other activities they choose. 
• We also had the families point out that the state was applying the wrong standard in deciding that DT should be subject to heightened scrutiny. 

"We explained that the rule (quoted above) does not require heightened scrutiny just because a setting is located on a campus and is close to an ICF/DD. In fact, the CMS rule says nothing about location. Instead, heightened scrutiny is limited to settings that isolate individuals. By having each family explain how their family member is not isolated, we were able to show that DT did not come within the settings that required heightened scrutiny.”…

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

from Covington and Burling, LLP, 1/17/17

“We believe that both the regulations and subsequent CMS guidance can be challenged as exceeding CMS’s authority. The effect of the regulations is to limit the choices of living situations for individuals with disabilities, and to replace the preferences of individuals, families and guardians with the preferences of CMS as to which setting best suits the needs of a particular individual.” 

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“The Federal Government’s Quiet War on Adults with Autism” 

by Jill Escher, 4/19/16

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The Coalition for Community Choice and the Madison House Autism Foundation have been following the implementation of the Federal settings rule since 2014. They have extensive knowledge of State Transition Plans and the effort to preserve innovative housing solutions for people with autism and other developmental disabilities. For questions, see contact information here.

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Another threat to replacing the preferences of individuals and their families and guardians with the preferences of CMS and federally-funded advocacy organizations, is the promotion of Supported Decision-Making (SDM). SDM is based on the belief that all people with disabilities can make and communicate decisions for themselves regardless of the nature or severity of their disabilities. Many SDM advocates refuse to acknowledge that disability can impair an individual's capacity to make decisions and they support the total elimination of guardianship. 

See Guardianship vs. Supported Decision-Making

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"The idea that one residential model is appropriate for the entire spectrum of intellectual ​and developmental disability — from college-educated self-advocates to profoundly impaired individuals at risk of detaching their own retinas or bolting into traffic — is patently absurd."

by Amy Lutz in "Myth - Truth", an article on Pennsylvania's proposed bill to close all Intermediate Care Facilities for Individuals with Intellectual Disabilities

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"VOR Celebrates the ADA and Recognizes the Full Meaning of the Olmstead Decision"

The Americans with Disabilities Act and the 1999 Supreme Court Olmstead decision protect people with disabilities from discrimination in their choice of residential settings, but they do not exclude the choice of institutional settings necessary for individuals to receive the services they need, nor do they ban congregate settings of more than 4 individuals with disabilities receiving services in a group setting.

See also, 

VOR Olmstead Resources

and

“The Olmstead Decision has been Misinterpreted”


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HCBS Update as a Word Document