Michigan public forums on "Integrating Care"

The Michigan Department of Community Health is holding public forums on "Integrating Care for Dual Eligibles in Michigan".

Before your eyes glaze over, let me explain.

Dual eligibles are people who qualify for both Medicaid and Medicare. For an adult with developmental disabilities, this usually happens when a parent who has been paying into Social Security dies or retires. The disabled adult-child becomes eligible for Social Security and Medicare benefits. The vast majority of adults with developmental disabilities also qualify for Medicaid when they become 18 and the family's income is no longer counted in determining eligibility for Medicaid services. Medicaid pays for medical services as well as an array of mental health services provided through local community mental health agencies.

The Michigan Department of Community Health (MDCH) has contracted with the federal Centers for Medicare and Medicaid Services (CMS) to develop a plan to integrate care for people who are eligible for both Medicare and Medicaid. The ultimate goal of the project is to serve this population more efficiently by improving the quality of care and reducing costs.

The forums for public input on the project will be held in four different locations in the state. For those living in Southeast Michigan, the closest public forum will be in Southfield:

 1 - 4 pm on Wednesday, July 27, 2011
The Hilton Garden Detroit-Southfield
2600 American Drive
Southfield, MI

In addition to hearing a presentation from Michigan’s Medicaid agency, forum participants will be asked to describe what they like about the current system as well as issues that exist. They will also offer feedback regarding the state’s proposed approach for integrating care.

WHY ARE THESE FORUMS IMPORTANT? They are an opportunity for people with DD and their families to remind the state that there is a small but important minority of people who are included in this population of "dual eligibles" who are often overlooked in discussions about reform of our health care system.

This is from the Michigan Association of Community Mental Health Boards:

"Persons with specialty behavioral health needs [the latest term for mental health services] make up a significant part of the dual eligible population.  They represent more than 25% of the dual eligible population statewide.   They also represent a significant part of the persons served by the public mental health system.  In FY09, 54,396 of the persons served by the community mental health system were persons with dual eligibility, more than 25% of the total persons served.   There were 35,339 adults with SMI, 22 children with SED, 18,093 people with DD (6,010 of which were on the Habilitation Supports Waiver).   As a group, these individuals have the most complex care needs of persons served by our system.   As a result, the Medicaid expenditures for the specialty services for these persons was $1.1M, almost 50 % of the total Medicaid expenditures for specialty mental health and developmental disabilities services statewide."

Even if your family member is only eligible for Medicaid, changes in care for "dual eligibles" could significantly affect the delivery of all mental health services. We need to be part of the reform effort rather than victims of it.
 
More Information:

Agenda for the forums including discussion questions
 
Stakeholders may submit comments on integrated care eat any time to: Integratedcare@michigan.gov . 
 
For questions about the forums, contact Dawn Wade at at Public Sector Consultants, at dwade@pscinc.com or  (517) 484-4954.

Michigan Medicaid comments on CMS proposed rules (CMS-2296-P)

Comments from Michigan Medicaid were submitted by Jacqueline Coleman here.  To view the document, scroll down the page to Attachments - "Comments on CMS Proposed Rule CMS-2296-P" and click on "PDF" to open the file.

The proposed regulations affect people who are elderly and live in Assisted Living Facilities and other settings as well as people with developmental disabilities. Michigan Medicaid is concerned with what will happen to people living in these ALF's and other licensed settings who have chosen them over care in a nursing home, if the proposed regulations do not allow waiver services to be provided in these settings. The MI Choice waiver mentioned here is another type of waiver that Michigan uses to provide services to people who are elderly or disabled.

Michigan Medicaid comments on this proposed rule: "441.301(b)(1)(iv) ...A setting is not integrated if it is: (A) Located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment or custodial care; in a building on the grounds of, or immediately adjacent to, a public institution; or a housing complex designed expressly around an individual’s diagnosis or disability, as determined by the Secretary; or (B) Has qualities of an institutional setting, as determined by the Secretary." 

The state agency makes an important distinction between "optimal community integration" and other options:
 
Michigan would agree that the description of acceptable settings represents optimal community integration. However, as described it would eliminate important options that now contribute to the array of settings available to adults with disabilities and the elderly. In 2009, Michigan amended its MI Choice HCBS 1915 (c) waiver to include services provided in licensed settings. Licensed settings in Michigan include Adult Foster Care (AFC) homes and Homes for the Aged (HFA). 

 ...
As of May 1, 2011, the MI Choice waiver was providing services to 529 participants in licensed settings. Of this group, 387 participants transitioned to the setting from a nursing facility. The other 142 were at imminent risk of entering a nursing facility when enrolled in MI Choice. These are participants who chose the setting and remain there even though they have the option to
return to a nursing facility or, in some instances, move to a more independent setting. The vast majority of these homes would not meet the criteria in the proposed rules. Virtually all of these MI Choice participants would move to a nursing facility. This move to a more restrictive setting would ignore the participant’s choice, diminish the participant’s quality of life and cost Medicaid 2-3 times as much per day.

The following examples describe existing situations that would not meet the proposed criteria: 

• MI Choice waiver participants living in homes licensed as an AFC on the grounds of continuing care retirement communities that included a skilled nursing facility. The home may provide a high level of independence and community integration. Further, the resident very likely appreciates the proximity to the skilled nursing facility for situations when that level of care is necessary, e.g. recovering from an illness. In some cases, the AFC resident has a spouse in the skilled nursing facility and the proximity allows them far greater opportunities to maintain their relationship. 
• An AFC or HFA that provides dementia care is a setting designed around a diagnosis, which would exclude it from approved settings under the proposed rules. For the MI Choice participants residing is such settings, the residence provides a more home-like setting and more independence than a skilled nursing facility. A move from such a home to a nursing facility would be extremely detrimental to the resident and would outrage the resident’s family. 
• Many of the MI Choice participants in licensed settings are not elderly. The preamble to the proposed rules suggests that they would be excluded from the provision that certain assisted living facilities may permissible for older persons. 
• There are a small number of MI Choice participants living in licensed settings who simply have no other place to live. These include individuals with behavioral problems, such as sexual acting out, that let to their denial of admission by nursing facilities and other settings. MI Choice services provided in a small, all male AFC resulted in a very satisfactory and successful setting. There are also individuals with Traumatic Brain Injuries that presented unique and significant behavioral issues. There are small AFC homes that specialized in care for this population and provide a far more successful and independent setting than any other option.

There are also comments on Person Centered Plans and other concerns that arise out of the CMS proposals. 

Ian the Graduate: For he's a jolly good fellow...

Ian graduated from school on June 8th this year. For special education students who make it through the 25 - 26 years they are allotted by Michigan's Special Education law, graduation is a bittersweet moment. Ian has many fans at High Point School among the teachers and support staff who will miss him dearly, almost as much as he will miss them. He will probably see his best friend David only on special occasions. We are working out things for him to do with his time, but the truth is it will be hard to match the program he is leaving.

High Point School is the only center-based program remaining in the Washtenaw Intermediate School District (WISD). It serves 60 - 70 students with multiple disabling conditions, including severe medical, physical, intellectual, and behavioral disabilities. The program shares a building with Honey Creek School, a charter school sponsored by the WISD. For the parents of High Point students, the High Point Program is generally valued most for the skill and experience of its staff and an environment that is caring and supportive of both students and families. The benefit of sharing a building with the charter school for kindergarten through 8th-graders is frosting on the cake.

The inclusion movement, whose proponents insist that all children should be educated together in the same classrooms, has led to the closure of many center-based programs over the last twenty years. High Point avoided closure by bringing regular education students into the special education building. Opportunities for both groups of students to spend time together are informal and relaxed and neither group has had to give up anything to accomplish this.

I am grateful for the teachers and support staff at High Point School who are so good at what they do that even parents can forget just how difficult their jobs are. Students with tracheostomies and feeding tubes, seizures, difficult behaviors, exotic syndromes, and frequent medical emergencies don't seem to faze them. What you see as an observer walking through the halls are purposeful activities and happy and engaged students.
 
When I think of Ian's friend David, I will always remember him in his favorite spot in the corner of the classroom where he can see and hear everything that goes on. Although he does not talk, I'm almost certain he manages to communicate to his mother everything that went on at the end of the day. He loves to listen in on conversations and stares daggers through anyone who comes between him and his favorite video playing on the TV screen. He has a sign up on the wall that a teacher's assistant found for him that says:

 
I'd like to think that Ian may do the same some day and boy, will we get an earful.

Michigan comments on CMS proposed rules (CMS-2296-P)

If you would like to see a good sampling of comments from Michiganders on the CMS proposed rules, follow this link.

The proposals from the Centers for Medicare and Medicaid Services would limit where Home and Community Based Services could be provided, causing disruption for people already living and receiving services in settings that would no longer be approved by the CMS. For future recipients of HCBS services, their choice of options would be restricted to those determined by CMS to be "integrated in the community"  and "not institutional in nature".

As you will see, there are a variety of views on these proposals and many thoughtful responses.

White House disability call features Jill Biden, Lynnae Ruttledge, and Sharon Lewis

White House disability calls occur once a month to keep you informed on a variety of issues and to introduce you to people who work on disability issues in the Federal government.

If you would like to be added to the White House Disability Group e-mail distribution list, e-mail disability@who.eop.gov and provide your full name, city, state, and organization.

Dr. Jill Biden will be speaking from Greece. She is leading a Presidential delegation to the Special Olympics in Athens. Also on the call will be Lynnae Ruttledge, Commissioner of the Rehabilitation Services Administration, and Sharon Lewis, Commissioner of the Administration on Developmental Disabilities.

Call in at least five minutes early to participate in the call.
 
Conference call information:

Dial in for listeners: 800-230-1951

Title: White House Disability Call (use instead of code)

Date of Call: 06/27/2011

Start Time: 10:30 AM Eastern (dial in 5 minutes early)

Arkansas v. DOJ: Federal Court supports parents and guardians and defines integration under the ADA

The U.S. Department of Justice spent years trying to prove that the Conway Human Development Center in Arkansas (an Intermediate Care Facility for the Mentally Retarded - ICF/MR) violated the rights of its residents under the U.S. Constitution and the Americans with Disabilities Act by providing substandard care and failing to integrate residents into the community.  The Court resoundingly disagreed and dismissed the case.

Why is this case important? The Americans with Disabilities Act and its interpretation by the Supreme Court in the Olmstead decision have been cited by many professionals and advocates to argue against all forms of congregate living and specialized services provided in group settings. They incorrectly claim that grouping people with disabilities together is segregating and therefore discrimination under the ADA. This case shows that even in a larger facility, the needs of the individual, the appropriateness of care, and the voices of parents and guardians are paramount in defining the least restrictive environment for each person. Non-institutional settings do not inherently guarantee the greatest integration possible for any individual. To limit services and residential options to "non-disability" settings does nothing to assure that a particular individual will be integrated into the community to the extent appropriate or possible for that person.

Here is a summary of the case from VOR, the only national organization that supports a full range of services and residential options for people with intellectual and developmental disabilities, including home and community based services and ICFs/MR. VOR (of which I am a member) is supporting legislation, H.R. 2032, to restore individual and family decisionmaking in cases such as this one.

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U.S. v. Arkansas: Victory for Choice
http://vor.net/get-help/legal-resources
 
Background
In an 85-page ruling, Chief U.S. District Judge J. Leon Holmes dismissed a U.S. Department of Justice (DOJ) case finding that the DOJ failed to prove its claims that the Conway Human Development Center violated its residents’ rights under the U.S. Constitution by providing substandard care, as well as under the Americans with Disabilities Act (ADA) (community integration). Judge Holmes questioned the authority, expertise and methods of several expert witnesses used to support the federal government’s arguments. He extensively cited testimony of residents’ parents and guardians who he noted were “overwhelmingly satisfied” with the treatment the residents receive at Conway and “believe that the Center is the least restrictive, most integrated placement appropriate for their children and wards.”  (U.S. v. Arkansas, p. 8)

Family / Guardian Decisionmaking
“Most lawsuits are brought by persons who believe their rights have been violated. Not this one . . . All or nearly all of those residents have parents or guardians who have the power to assert the legal rights of their children or wards. Those parents and guardians, so far as the record shows, oppose the claims of the United States. Thus, the United States [Department of Justice] is in the odd position of asserting that certain persons’ rights have been and are being violated while those persons – through their parents and guardians disagree.”  (Id., p. 1).

Defining Integration
“’Community placement’ is a term that implies a more integrated, less restrictive setting than does the term “institution,” but it does not follow from the use of these terms that a resident automatically will have a greater degree of interaction in community placement, i.e., with a waiver provider, than in an institution such as Conway Human Development Center.  The evidence establishes that residents of Conway Human Development Center do interact with nondisabled persons – the Center is not a prison with inmates barred from interaction with the outside world; and conversely, the evidence establishes that placement with a waiver provider does not guarantee any amount of interaction with nondisabled persons.” (Id., p. 61; see also, p. 81, citing Olmstead, “[DOJ] Failed to prove that Conway Human Development Center is not the most integrated setting appropriate to the needs of any specific resident.”)

The “oddity” of a federal agency suing itself
[DOJ cases = DOJ v. HHS (CMS); compare to, P&A cases = HHS (ADD) v. HHS (CMS)].
“It is another oddity of this case that the institution at issue is funded and regulated by one department  of the executive branch of the federal government while another department of the executive branch contends that its conditions are so deplorable as to violate rights guaranteed to the institution’s residents by the United States Constitution. More pointedly, the United States simultaneously funds Conway Developmental Center, certifies it as eligible for those federal funds, and contends that the conditions there are so deplorable as to be unconstitutional.” [Id., p. 4 (fn 2)].

Compare to H.R. 2032
Just as the federal judge in the Conway case recognized, families and guardians are a necessary and important voice in matters impacting their family members with significant intellectual and developmental disabilities, including where they receive services and the quality of those services (see also, DD Act and Olmstead). 

H.R. 2032 aims to restore individual and family decisionmaking in federally funded class action lawsuits and DOJ actions. Specifically, H.R. 2032 provides that residents of ICFs/MR, or where appointed, their legal guardians, receive notice of a federally-funded class action lawsuit involving the ICF/MR before it is filed, and be given a time limited opportunity to opt out.  H.R. 2032 also requires that DOJ consult with families as part of any action, and if a lawsuit is filed provides residents of the affected ICF/MR or where appointed, their legal guardians, a right of intervention. The Conway case helps demonstrates both the value of family/guardian input and DOJ’s history of excluding their input. Similar examples include cases in Virginia, Georgia, Illinois and Tennessee

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Read the full decision here.

More comments on proposed HCBS regulations (CMS-2296-P)

Comments from Ed Diegel at ddAdvocates of Michigan, 6/1/11:

This is a time of tremendous change regarding funding, ideology and governance of the service delivery process for persons with Developmental Disabilities.
 ...
Ideology is becoming more rigidly entrenched in a system which often minimizes the value of family involvement and favors a one dimensional, full inclusion model for all persons with developmental disabilities without regard for their capabilities, or personal desires and choices. 

Common-sense, which says keep what is good  and build on it, is ignored. It would define a success as a community that provides a full spectrum of  services to meet the needs and desires of all persons with developmental disabilities—from the most involved to the most independent; and it would allow individuals the right to move back and forth between settings as their circumstances and desires changed.

Instead current ideology sees all ‘consumers’ including the most disabled living in completely integrated settings; something many neither want nor can handle. In addition it threatens funding for even the most successful ‘congregate settings’ based on artificial criteria like the number of residents or workers, or flexibility of meal time rather than real benchmarks like the quality of supports provided and the desire of clients to participate there. 

Advocacy agencies including several in Michigan envision the elimination of all congregate settings and activities (group homes, work shops, Special Olympics, Fun Clubs and so on).
...

Most imminent of these issues are proposed regulation changes impacting the Home and Community Based Services Waiver administered by the Centers for Medicare and Medicaid Services (CMS).

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More comments from Ed, 6/8/11 

The following link to Age of Autism is must reading for anyone in the country who considers themselves an advocate for persons with developmental disabilities. Notice that the author nowhere wants to restrict services or the independence of high functioning person with disabilities; for instance: those  who are capable of enjoying even full time jobs, college experiences and home ownership. What the author wants, and many people who commented on the link want is for CMS  to recognize that its proposed residential guidelines: 

• will be too limiting or demanding for most persons with severe to moderate disabilities and that
• needed and desired and appropriate services will be ruled out and / or dismantled.

One size fits all mentality is very popular in mainstream advocacy circles in Michigan and its effects are already being seen in

• underfunding of congregate day programs 
• efforts to close larger group homes regardless of quality of service 
• limited housing and respite options for the most severely impaired.

In effect, mainstream advocates hold up the capabilities of our most capable children and adults  and pretend that the rest don't exist or will be able to tag along. This mentality is now being reflected in proposed CMS Guidelines for housing ... 

Link to Age of Autism here. 

Comments on CMS proposed regulations are due by 5 p.m. June 14, 2011

Submit comments electronically here .

Link to proposed regulations here. 

Link to Understanding HCBS Waivers here. 

Link to ddAdvocates of Michigan here. 

Link to comments on proposed CMS regulations submitted by Jill Barker here.