Michigan issues guidance for use of the Supports Intensity Scale

Michigan Department of Community Health Issues SIS Use Guidance
(from the ARC Michigan Friday Mail)

[The Supports Intensity Scale (SIS) is an assessment instrument from the American Association on Intellectual and Developmental Disabilities (AAIDD).  The test measures an individual’s support needs in personal, work-related, and social activities in order to identify and describe the types and intensity of the supports an individual requires. Some families who have been made aware of the assessment do not believe it is appropriate for all levels of disability. Others have found it helpful for person-centered planning.]

The attached file (Waldrop v. New Mexico Human Services), contains the findings from a SIS lawsuit that was filed in New Mexico. It says that if the state wants to use the SIS to determine services (which is what it is not supposed to be used for in Michigan), then individuals are entitled to advanced notice and Medicaid Fair Hearings.

Earlier this week Thomas Renwick, Director of the Bureau of Community Based Services, BHDDA, issued a clarification on use of the Michigan Supports Implementation Scale (SIS). 
In his memo, Mr. Renwick indicated that “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.”


Mr. Renwick also indicated that the Michigan Department of Community Health’s (MDCH) SIS workgroup was finalizing the Michigan SIS Implementation Manual, which will serve as a guide in outlining the requirements and procedures related to the implementation of the SIS in Michigan.
 

Persons with questions regarding SIS implementation should contact Belinda Hawks at hawksb@michigan.gov. 

Michigan: HCBS Waiver Conference - 11/18-19/2014

This is a conference on Home and Community Based Medicaid Waivers sponsored by the Michigan Department of Community Health and the Michigan Association of Community Mental Health Boards (MACMHB).

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The Michigan Department of Community Health & The Michigan Association of CMH Boards Present:

ANNUAL HOME AND COMMUNITY BASED WAIVER CONFERENCE

November 18 & 19, 2014
Kellogg Hotel & Conference Center
55 South Harrison Road, East Lansing 48823

FEATURED PROGRAMS
Children s Waiver Program (CWP)
Habilitation Supports Waiver (HSW)
Autism Applied Behavior Analysis (ABA) Benefit

Conference Objective: This conference will provide technical assistance and training on the implementation and maintenance of the Children s Waiver Program (CWP) and the Habilitation Supports Waiver (HSW), clinical issues, and administrative functions relevant to these waivers. Additionally, this conference will provide training in ASD, evidence based services, highlight programs across the state, and provide technical assistance on implementation of the Medicaid/MIChild Autism Benefit.

Technical assistance and training on implementation and maintenance of the Waiver for Children with Serious Emotional Disturbance (SEDW) will now occur as a part of the annual Wraparound Conference to be held at Shanty Creek Resort on August 18-20, 2014.

Who Should Attend: Case managers, supports coordinators, clinicians, behavior analysts, administrative staff, providers, autism coordinators, people receiving services and family members.

Special Rate: A special $20 conference rate will be offered for people receiving waiver services and their family members. A limited number of scholarships are available to people who receive services and their families. Scholarships may cover registration fees, overnight rooms, travel expenses, meals and child care. Deadline to request scholarship: September 12, 2014. To request a scholarship form, contact Chris Ward at cward@macmhb.org or 517-374-6848.

Continuing Education Credits for Licensed Social Workers: The Michigan Association of Community Mental Health Boards (MACMHB), provider #1140, is approved as a provider for social work continuing education by the Association of Social Work Boards (ASWB) www.aswb.org, through the Approved Continuing Education (ACE) program. MACMHB maintains responsibility for the program. ASWB Approval Period: 11/10/13-11/10/16. Social workers should contact their regulatory board to determine course approval. Exact hours are pending.

Overnight Accommodations/Directions: The Kellogg Hotel & Conference Center is located in East Lansing adjacent to Michigan State University. Our special guestroom rate is $75 per night. For specific directions or to reserve a room, please call 517/432-4000 and mention that you are attending the C-Waiver Conference.

Conference Brochure & Registration Materials: Conference details and registration will be available on our website, www.macmhb.org; if you have any questions, please call (517) 374-6848.

Christina Ward, Administrative Executive Michigan Association of Community Mental Health Boards
426 S. Walnut Street, Lansing, MI 48933
(517) 374-6848 phone
(517) 374-1053 fax
www.macmhb.org
 

Michigan Employment First Policy: One size fits all?

The Michigan Developmental Disabilities Council approved a policy called "Employment First in Michigan" in August of 2013 which was then submitted to the Michigan Department of Community Health (MDCH) for consideration as state policy. [As a new member of the DD Council, I did not attend any Council meetings until September 2013 and did not vote on the policy.] The vote by the DD Council was not unanimous.

A meeting was held on November 20, 2013 with representatives of the Michigan Department of Community Health (MDCH) to discuss the proposed policy where many good suggestions were made to make the language consistent with the Americans with Disabilities Act, the Supreme Court Olmstead decision interpreting the ADA, and to honor the right to choice and self-determination.

The proposed policy, however, was not changed to reflect any of the comments from the November meeting. Bob Brown, a parent of an adult with developmental disabilities and a member of the DD Council wrote to James Haveman, the Director of MDCH, voicing his concern that if changes were not made, the document would lead "…to an outcome that restricts and diminishes an individual's choices rather than expanding them." Bob is most concerned that the policy as currently worded will be used to eliminate the choice, based on individual need and preferences, for programs where people like his daughter receive community-employment through a center-based program that also offers skill-building services for people with cognitive disabilities. 

I would further emphasize the broad spectrum of people with disabilities, many of whom can work successfully in integrated employment settings and others who, like my sons, are unlikely to achieve anywhere near this level of accomplishment without a miraculous recovery of functioning or some other unlikely medical breakthrough. High expectations and lofty goals for achievement can be inspiring for some, but demoralizing and damaging for others, taking the focus off appropriate services that help individuals achieve realistic goals and assure safety, good health, appropriate care, and well-being.

You can see Bob Brown's comments here. His recommendations include changes that are consistent with federal law regarding employment for people with disabilities. A Word version of the proposed policy, without comments, can be found here.

If you wish to support Bob's comments (or not) on the Employment First Policy or add comments of your own, address them to:

Mr. James Haveman, Director
Michigan Department of Community Health
Capitol View Building
201Townsend Street
Lansing, Michigan 48913
 
You can e-mail comments to Nancy Grijalva at  grijalvan@michigan.gov or Sharon Danielis at  danielis@michigan.gov in Mr. Haveman's office.

The ARC Michigan to the State : Stop funding congregate settings

...sentenced to a bucolic lifestyle

The ARC Michigan is at it again, demanding that the state discontinue Medicaid funding for people with developmental disabilities participating in programs that don't meet the ARC's approval. This time around, The ARC MI, a state advocacy organization for people with DD, is backed up by five other advocacy groups whose executive directors co-signed a letter to James Haveman, the director of the  Michigan Department of Community Health (MDCH). Despite the backing of the Autism Society of Michigan, the Epilepsy Foundation of Michigan, the Michigan Disability Rights Coalition, United Cerebral Palsy of Michigan, and Michigan Protection and Advocacy Service, the ARC is still not persuasive in arguing that people with DD  are being discriminated against when they choose to participate in specialized programs designed for people with disabilities.

The complaint by these advocates appears to be based on the misconception that any congregate setting (a setting that serves more than two or three people with disabilities in a group to provide specialized services or residential options) is by definition discriminatory. They claim that this comes from the Americans with Disabilities Act (ADA) and the 1999 U.S. Supreme Court Olmstead decision, but this is easily disproved. This misreading or misinterpretation of the law makes one wonder if the executive directors of these influential organizations have ever read the ADA or Olmstead. Their misconception, however, is  prevalent among many government-funded advocacy groups and is even being used by state and federal governments as an excuse to eliminate specialized services and programs for people with DD. Who knows whether the advocates have deliberately misinterpreted the law, or whether they have come to believe their own misconceptions after hearing them repeated over and over again.

The project that is receiving the most attention from these groups at the moment is Benjamin's Hope, a non-profit in Holland, Michigan. This is a newly opened parent-initiated project that will eventually house 24 people with autism and other developmental disabilities in custom-designed homes. A 40-acre campus will provide recreation, meaningful employment, and other programs for both residents and the larger Holland and Ottawa County communities. It is a public/private model, that uses public funds for direct care. Medicaid "Home and Community Based Services" funds pay for direct services for participants but specifically do not pay for housing, food, or other basic supports. (HCBS funding is generally available for eligible DD adults regardless of where they live.)

The advocates shrilly contend that the existence of projects such as Benjamin's Hope reverses policies "in the direction of integration and inclusion…" They find them "unwarranted and frightening", calling the "demand" for public dollars "a form of blackmail...They are saying we will decide where and ho[w] people, including our children, with developmental disabilities will be served well past our life time. They will be isolated, segregated and served in institution-like situations, albeit a private one, using public dollars."

"…should Medicaid/CMS [the federal Centers for Medicare and Medicaid Services] end up permitting funding, generations of persons with developmental disabilities will be sentenced to occupy isolated settings separate from real community and the rest of us, even if at some artificial point community contact is attempted." [click here for more on the controversy over proposed CMS rules.]

Blackmail? Isolation and segregation? Institution-like situations? That's strong language for these organizations to use, especially considering that their letter offers no evidence to support any of these accusations. I know of no individuals living at Benjamin's Hope, for instance, who had to blackmail their local Community Mental Health agency to receive funding. It is safe to assume that people involved in the project were funded only after a careful process of individual evaluation, person-centered planning, and the weighing of possible alternatives. Their families most likely did a great deal of soul-searching before they made the momentous decision to place the care of their loved-ones in the hands of others.

Just how isolated and segregated are the people living at Benjamin's Hope? Within two weeks after the ARC Michigan letter was written and signed, Benjamin's Hope held its grand opening,"the Firelight Festival of Hope", that included not only the people directly involved in the project, but hundreds of people from the community enthusiastically showing their support.  In addition, State Senator Arlen Meekhof and state Representative Amanda Price presented a tribute honoring the non-profit, signed by Lt. Governor Brian Calley whose daughter has autism. The success of Benjamin's Hope is strongly  linked to the fact that it is engaged with and supported by its surrounding community.

Furthermore, as far as I am aware, no one involved in Benjamin's Hope or any other family-initiated and community-supported project ever suggested that they intend to impose their model of community living on any individuals who do not want it. This is in sharp contrast to the approach taken by the professional advocacy organizations.

Perhaps the ARC and the co-signers of the letter to the State would not have found projects such as Benjamin's Hope so "frightening" if they had ever bothered to talk to the people involved or to their families. None of the executive directors who signed the letter bothered even to contact the director of Benjamin's Hope.

Could there be a more obvious display of the arrogance of advocates who are so sure that they know what is best for everyone that they never have to contemplate the harm they may be doing to the people they claim to represent?

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Links to documents:

Letter to CMS from Dohn Hoyle, the ARC MI Executive Director, 8/13/13
Letter to CMS from U.S. Representative Huizenga supporting Benjamin's Hope
Letter to MDCH from The ARC MI and other advocacy groups 9/3/13

The ADA, Olmstead, and Choice: 

The Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities. It requires state and local governments to “administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities”, but it does not define what an appropriate setting is for every person with a disability. Identifying needs and the appropriateness of settings can only be determined on an individual basis.

The Olmstead decision determined that unjustified institutionalization is discrimination. Transfer to a community placement from an institution is required only if the State’s treatment professionals have determined that community placement is appropriate, the individual affected does not oppose the transfer, and the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of other with mental disabilities.
 
Olmstead Resources
1999 U.S. Supreme Court Olmstead Decision
Olmstead Presentation by Bill Burke
What Olmstead is Not

Draft revisions to Michigan's Dual Eligibles plan

Is it possible to make the Michigan plan for Dual Eligibles worse for people with developmental disabilities? Apparently, yes, but we all still have a say in how this comes out and so does the Michigan legislature.
 
This is an e-mail from Tom Bird from ddAdvocates of Western Michigan sent out on 9/5/12.  It provides links to documents and other sources of information on Michigan's new proposal for an Integrated Care Bridge between Medicare, Medicaid, and mental health services.

From the Michigan Department of Community Health (MDCH): 

The Michigan Department of Community Health submitted documents to the Centers for Medicare and Medicaid Services (CMS) in response to its request for additional detail regarding the Integrated Care Bridge.  The Care Bridge is Michigan’s model for care coordination that was first outlined in the integrated care proposal submitted to CMS in April 2012.

These documents are drafts of the proposed Care Bridge concepts, have been posted to the website, and will be updated as discussions with CMS and stakeholders continue.
 
See the current Care Bridge concepts here. Scroll down to "Care Bridge Documents - 8-30-2012" for the link to the documents. The direct link to the pdf file is here .

Tom Bird's comments on the proposal:

"This contains the letters to CMS as well as the power point presentation, and a 'narrative' on how the care bridge would work, in addition to the vignettes on how it is supposed to work. The PLC [Primary Lead Coordinator] is supposed to be an ICO [Integrated Care Organization] (multi-county Health Plan) employee, responsible for the initial screening and intake, and the LC [Lead Coordinator] is either an ICO employee or an ICO-certified and trained contractor of another organization which the ICO will ultimately have control over and oversight of. It could be an existing CMH supports coordinator, but they would have to be trained and supervised by the ICO, with their time billed to the ICO. Either way, it puts the ICO (Health Plan) in total control of the 'care Bridge' functions as well as all of the funding for both Medicare and Medicaid (which are co-mingled and can be redistributed as the ICO desires); it puts the ICO in a position to deny or restrict services desired by the consumer, all far removed from the current system of local delivery, which presently offers local input and oversight via control of CMH Board appointments. If you add the incentive for the ICO to restrict (expensive) services due to the proposed 'profit sharing' of any savings, you have a big red flag waving."

Legislative review of changes to the Dual Eligibles plan is required by law: 

The following is wording from the 2012 appropriations law concerning legislative review of plans submitted to the federal Centers for Medicare and Medicaid Services (CMS):

Sec. 264. 
(1) Upon submission of a Medicaid waiver, a Medicaid state plan amendment, or a similar proposal to the centers for Medicare and Medicaid services, the department shall notify the house and senate appropriations subcommittees on community health and the house and senate fiscal agencies of the submission.

(2) The department shall provide written or verbal biannual reports to the senate and house appropriations subcommittees on community health and the senate and house fiscal agencies summarizing the status of any new or ongoing discussions with the centers for Medicare and Medicaid services or the federal department of health and humanservices regarding potential or future Medicaid waiver applications.

(3) The department shall inform the senate and house appropriations subcommittees on community health and the senate and house fiscal agencies of any alterations or adjustments made to the published plan for integrated care for individuals who are dual Medicare/Medicaid eligibles when the final version of the plan has been submitted to the
federal centers for Medicare and Medicaid services or the federal department of health and human services.

(4) At least 30 days before implementation of the plan for integrated care for individuals who are dual Medicare/Medicaid eligibles, the department shall submit the plan to the legislature for review. [emphasis added]

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Here is a refresher course on the issues regarding dual eligibles and people with DD.

Links to comments on the CMS proposed regulations (CMS-2249-P2) for Medicaid waivers

It is always illuminating to read comments on proposed policies for people with disabilities from people and organizations with differing perspectives, agendas, and interests. Here is the link for finding comments on the proposed regulations on Home and Community Based Services waivers from the Centers for Medicare and Medicaid Services  (CMS-2249-P2). To read the comments, click on the blue highlighted text that begins with the abbreviation for the state and the name or organization of the commenter. Sometimes the comments appear in full on the opened page, but usually they are attached, either as a Word document or a PDF file. Look for "View Attachments" and click on "DOC" or "PDF" to open.

HCBS Medicaid waivers have been around for a long time and are used to pay for community services as an alternative to services provided in institutions. Medicaid law identifies institutions as nursing homes, Intermediate Care Facilities for the Mentally Retarded (ICF/MR), hospitals for mental diseases and other hospital settings. In MIchigan, the Habilitation Supports Waiver (HSW) is the Medicaid waiver for people with developmental disabilities. It is currently used to pay for a wide range of services and settings from supported living services provided in the disabled individual's own or family's home to state-licensed community-based facilities that provide more intensive care and support. It also pays for community living services that enable an individual to fully participate in community activities and services, as well as specialized day and skill training programs in accordance with the individual's plan of services developed through a person-centered planning process.

If these proposed regulations were to become final as they are now written, they would make it more difficult to use Medicaid waiver funding to pay for settings that are deemed to have "qualities of an institutional setting" as defined by the regulations and ultimately the Secretary of the U.S. Department of Health and Human Services. This would undermine and lead to the likely closure of many specialized programs that have been designed by family and community organizations that are person-centered, consumer-driven and based on choice. Also threatened would be state-licensed facilities and other programs operated by Community Mental Health agencies or CMH contracted providers.

Here are links to comments that are of special interest to people living in Michigan:

• Comments from the Michigan Department of Community Health
• Comments from Michigan Protection and Advocacy Services (MPAS)
• Comments from the ARC Michigan

The national organization for protection and advocacy agencies, the National Disability Rights Network (NDRN), has also commented on the proposed regulations. Many national and statewide organizations have submitted comments that agree with the comments from NDRN.

Here is an especially poignant plea from 86-year old parents who have finally found the right place for their son and fear it might be threatened by these regulations.

The Senate Fiscal Agency Comments on Michigan's Dual Eligibles Plan

For a clear and concise overview of the Michigan plan for Dual Eligibles and its effects on the state, read the analysis from the Michigan Senate Fiscal Agency (SFA).  According to its Website, the SFA is "a nonpartisan legislative agency created to provide the Michigan Senate with sound and unbiased assistance in two principal ways: providing staff support to the Senate Appropriations Committee and assisting all members of the Senate on State budget-related issues; and providing analysis of all proposed legislation being considered by the Senate."

The report is called "The Snyder Administration's Proposed Dual Eligibility Waiver". You can link to it from the SFA Website under "State Notes"

From the SFA report:

Who will be affected by the proposal (page 2): 

The majority of the 211,000 dual eligibles in Michigan are low-income elderly people. However, there are many nonelderly who are Medicare recipients, in particular disabled individuals with work histories and many developmentally disabled and mentally ill individuals. In fact, over 40% of dual eligibles are under the age of 65, with developmentally disabled and mentally ill individuals under age 65 comprising 15% of the total dual eligible population. Because the population affected by this waiver extends beyond the low income elderly, designing a program is more complicated than just addressing issues surrounding medical care for the elderly.
…
The Administration's proposal would have a major impact on the public behavioral health system, that is, Community Mental Health (CMH) boards and the Pre-Paid Inpatient Health Plans (PIHPs). Due to many developmentally disabled and mentally ill adults being Medicare-eligible, nearly half of CMH and PIHP expenditures are for services to dual eligibles. The CMH and PIHP community expressed strong concern about the integration proposal as it was being developed.

Contracting with separate entities for physical health care (Integrated Care Organizations) and mental health services (Pre-paid Inpatient Health Plans) (pages 3-4): 

It should be noted that just because the State opted not to fold behavioral health services into the ICOs, one should not conclude that this could not happen in the future. The contracts would be for a specified period of time and the State could, in the future, choose to seek fully integrated care and have the ICOs cover all behavioral health services for dual eligibles.

When PIHPs were created a decade ago, the original proposal was to allow any entity, including private firms, to compete to provide behavioral health services to Medicaid clients. The final proposal gave right of first refusal to CMHs, which preserved the public mental health system's lead role in Medicaid behavioral health care. This waiver expires on September 30, 2013, and the State could opt to bid out the PIHP services at that time.

Continuity of Services (page 4):

Perhaps the greatest concern during any shift to an expanded managed care model is ensuring continuity of care. This is especially important for the dual eligible population, which includes many individuals with severe pre-existing health conditions. The Administration states that its contracts would include requirements to maintain existing services and providers"until an assessment is completed and care transition arrangements are made through the person-centered planning process"….

Savings (pages 5-6): 

On the savings front, the Governor's recommended FY 2012-13 DCH budget assumed savings of $29.7 million Gross and $10.0 million General Fund/General Purpose due to the dual integration waiver. Given that the waiver would not begin enrolling clients until July 2013, these savings, which would have to be realized for a subset of the population over the last three months of FY 2012-13, are questionable…

Assuming that savings eventually did occur, another concern is how they would be shared between the State and Federal government. The DCH estimates that, by the time the program starts, there will be about $9.0 billion in Medicare and Medicaid spending on the dual eligible population, and the vast majority of that will be Federal dollars (as all Medicare spending is Federal and almost two-thirds of Michigan's Medicaid spending is Federal). Therefore, assuming that the integration of care was successful in saving money, there remains the question of how the amount saved would be estimated and how it would be split between the State and Federal government. That matter would be determined in the negotiations between the DCH and CMS.

Conclusion (page 6)

This proposal represents certainly the most significant change in Michigan Medicaid policy since the shift to managed care for physical and behavioral health and arguably the most significant change in publicly funded health coverage since the advent of the Medicare and Medicaid programs over 40 years ago.

Comment #6: “Independent” advocates for individuals who have guardians in Self-Determination

[This is a continuation of my comments to the Michigan Department of Community Health on proposed changes to the Self-Determination Guideline.]

The subtitle for this post could be, "Give me a break!"

The proposed Guideline, in its fervor to protect individuals from their guardians, includes a requirement that CMH “must support individuals who have guardians who are using self-determination to identify an independent advocate.” When CMH and others involved in the planning process determine that the guardian is restricting the rights of the individual, CMH would have discretion to choose not to enter into Self-Determination arrangements or terminate these arrangements on that basis.

The court-appointed guardian is the legal representative of the individual. It is especially audacious of those who drafted the Guideline to encourage a CMH agency to attempt to replace that person with an “independent” advocate. There is no mention of the privacy and confidentiality of the individual when bringing in a third party to represent that person without the consent and, most likely, over the objections of the guardian. There is also no specific consideration of potential conflicts of interest.

It is also unwise for the state to allow a CMH agency to knowingly enter into complicated agreements and financial arrangements with individuals who do not have the capacity to understand or uphold their participation in such agreements.

Comment #5: Conflicts of Interest in Person Centered Planning and Self-Determination

[This is a continuation of my comments to the Michigan Department of Community Health on proposed changes to the Self-Determination Guideline.]

Participants in person centered planning should be reminded that its purpose is to serve the individual. It is important to recognize possible conflicts of interest with this goal:

• Community Mental Health (CMH) agencies are not immune from making unwise and uninformed decisions about people with DD based on their own lack of knowledge and conflicts of interest that put administrative convenience and the desire to save money ahead of the interests of the individual.   
• Service providers may have a financial interest in persuading a person with DD to choose their services over others.  
• Professional advocates promoting Self-Determination who espouse an ideology of full inclusion, the idea that everyone should lead a life fully integrated in the community, often support limitations on choice and restrictions on access to specialized programs that serve people with DD, regardless of the needs or desires of the individual or his or her family. Other conflicts of interest arise when an advocacy organization purporting to represent the interests of people with disabilities, receives funding to promote Self-Determination over other options or to provide services to implement Self-Determination arrangements such as fiscal intermediary services or “independent facilitation” of person centered planning. [A quick Google search brings up three organizations in southeastern Michigan - the ARC of Oakland County, The ARC of Northwestern Wayne County, and the ARC of Western Wayne County - that provide such services.] Whether an advocate is acting on behalf of the individual or on behalf of the organization as a service provider is brought into question.

When guardians have conflicts of interest that interfere with their duties, this is a matter for consideration by the Probate Court, not CMH or other participants in person centered planning. Person centered planning that leads to the development of Self-Determination arrangements is a cooperative effort that should promote the exchange of ideas about how best to serve the individual, but ultimately the guardian’s opinion is a stand-in for that of the individual in areas where the person is unable to make or communicate his or her own decisions. Sometimes a guardian who intervenes on behalf of the disabled loved-one is the only line of defense for a vulnerable person placed in harm’s way.

The proposed Self-Determination Guideline correctly recognizes the need to put the interests of the individual first, but it presumes that the guardian, because the guardian has authority to speak on behalf of the ward, has somehow usurped the rights of the individual and will not honor the wards needs and preferences. Furthermore, the only parties that would be sanctioned in this proposed Guideline for a perceived conflict of interest are the guardian and the individual for whom the guardian speaks. The Guideline would allow CMH to suspend or deny Self-Determination arrangements based solely on the individual’s status as ward and the presumption that the Guardian does not truly represent the interests of the ward. This is blatant discrimination and should not be part of any state policy for providing services to people with DD.

Comment #4: Guardianship and Self-Determination

[This is a continuation of my comments on proposed changes to the Michigan Department of Community Health Self-Determination Guideline.]

Many adults with DD have guardians when they are unable to make or communicate reasonable decisions for themselves in all or some aspects of their lives. According to Michigan law, guardianship is under the jurisdiction of the Probate Court, not the Michigan Department of Community Health. The purpose of guardianship is to protect people whom the court has determined have legal disabilities that make them vulnerable to abuse, neglect, and exploitation.

Most guardians of people with developmental disabilities are parents, other family members, or sometimes close family friends who have intimate knowledge of the needs and preferences of the individual with DD. Guardianship has legal standing and legal responsibilities. It is an invaluable tool that gives decision-making authority to families and friends so that they are better able to speak and act on behalf of their loved-ones, monitor living situations and services, assure that the rights of the individual are respected, and take action when things go wrong.

The draft Guideline, on page 10, says that “the PIHP/CMHSP shall have the discretion to limit the use of arrangements that support self-determination by individuals who have guardians because of the inherent tension between the principles of self-determination and the legal authority of guardians.” It goes on to say that, “despite this tension, the goal of guardianship--to maximize self-reliance and independence (MCL 330.1602)—is consistent with the principles of self-determination.” This is an incomplete statement of the goal of guardianship.

This is what the law actually says (MCL 330.1602): 
 
Guardianship for individuals with developmental disability shall be utilized only as is necessary to promote and protect the well-being of the individual, including protection from neglect, exploitation, and abuse; shall take into account the individual's abilities; shall be designed to encourage the development of maximum self-reliance and independence in the individual; and shall be ordered only to the extent necessitated by the individual's actual mental and adaptive limitations.
 
It is the duty of the guardian to protect the ward from neglect, abuse, and exploitation, to encourage the development of maximum self-reliance and independence, and to take into account the person’s actual and adaptive limitations. The Probate Court makes findings in each case that determine the extent of the guardian’s authority.

If there is any inconsistency here, it is that the theory of self-determination as it is interpreted by many of its proponents, is inconsistent with reality and does not recognize the actual limitations that many people with DD have. Neither does it recognize the authority of the court in protecting people who are unable to speak on their own behalf. 

Comment #3: Developmental Disabilities and Decision-making

[This is a continuation of my comments to the Michigan Department of Community Health on proposed changes to policy on Self-Determination]

People who have DD are by definition severely disabled, having disabilities that are chronic in nature and that adversely affect at least three areas of “major life activity”. Nevertheless, people with DD encompass a broad range of abilities, needs, preferences, and desires.  This makes it essential to consider the needs of each individual rather than basing decisions on generalizations, political expedience, administrative convenience, or rigid ideological theories.

Most, though not all people with DD, have cognitive impairments that affect their judgment and ability to understand or communicate decisions for themselves, while others may have physical disabilities that place no limits on their ability to think for themselves and make their own decisions. There are many individuals with DD who have complex behavioral problems that interfere with judgment that can jeopardize their own safety and well-being if these problems are not recognized and taken into consideration. Others have abilities that compensate for cognitive or behavioral problems in such a way as to make them capable of making most, if not all, decisions for themselves.

The presumption in the proposed Guideline is that individuals will direct the provision of services and allocation of funds by communicating their own preferences and agreement with the plans for implementation of these arrangements. Many people with DD, however, have difficulty expressing themselves and their communication may be easily misinterpreted. If a person answers, “Yes”, to every question that is put to him or her, it would be wrong to interpret this answer as a definitive expression of a preference or choice. If an individual’s judgment is impaired, as when a person makes decisions impulsively and without reflection, others need to take into consideration the safety and welfare of the person before making this the basis for an important decision. Some people with developmental disabilities are so eager to please that they will agree to almost anything, another reason to proceed cautiously before coming to an agreement on a plan of services. Others, like my sons, are unable to communicate in any specific way.

My two adult sons are at the more severe end of the spectrum of people with DD. They function at the level of infants 6 -12 months old, a fact that in no way diminishes their worth as human beings or their rights to legal protections when they lack the capacity to exercise their rights on their own behalf.

Comment #2: Self-Determination and DD

 [This is a continuation of my comments on proposed changes to Self-Determination policy proposed by the Michigan Department of Community Health.]
Self-Determination is a method of delivering services to people with developmental disabilities that allows individuals to have more direct control over the services they receive, over the people who provide the services, and over the expenditure of public funds to pay for the services. The primary tools for implementing Self-Determination are the use of an individual budget agreed upon during the person centered planning process and contractual agreements with service providers that reflect the preferences of the individual. The Guideline states on page four, that “Self-Determination shall be a voluntary option on the part of each person”. This includes people with the most severe disabilities who are unable to make decisions for themselves and therefore have court-appointed guardians who speak on their behalf.

The proposed Guideline describes in detail what is involved in setting up arrangements for Self-Determination. This includes working out agreements for employing service providers and handling public funds responsibly. The process is complicated and would be daunting for most non-professionals, with or without a disability.

The draft Guideline allows people with DD to choose varying levels of involvement in the technicalities of hiring and firing staff and managing budgets. These range from doing everything oneself, to hiring a Fiscal Intermediary or other agent qualified to handle budgeting and taxes or the hiring and firing of service providers, to participating in already established programs and services operated by the local CMH, to handing over the whole process of selecting service providers to CMH or another person (page nine: “A person shall not be required to select and direct needed provider entities or his/her direct support personnel if she or he does not desire to do so”).  Beyond that, people who want and need a more traditional program of services may choose not to use Self-Determination. These are reasonable adaptations to a complex arrangement to provide services. In some respects, however, these contradict the notion that the purpose of Self-Determination is to give the individual, with or without a guardian, direct control over the management of services and budgets.

In my view, the claim by people who promote Self-Determination, that it gives people with disabilities more freedom to choose the services they want and more authority over available resources compared to other arrangements through CMH, is exaggerated. All agreements as to how Self-Determination arrangements will be handled, how much money will be available to pay for services, and how the finances will be managed is subject to the guidance, approval, and continual oversight of the CMH agency. This is to be expected with an agency that has the responsibility for overseeing the expenditure of public funds, primarily Medicaid funds.

As in any dealings with CMH, there are a number of ways for an individual or guardian to appeal decisions they disagree with. It is important to keep other options available when Self-Determination is impractical or is not suitable to the needs of the individual. Self-Determination can place extra burdens on disabled individuals and families to administer the provision of services and funds normally handled by CMH, while the public agency still has control and must approve the expenditure of the funds provided. At best, these arrangements can open up new possibilities for providing and paying for desired services that are beneficial to many recipients of CMH services.

For my two adult sons who have severe DD and live in a licensed group home, Self-Determination is an impractical arrangement considering their need for a licensed setting, intensive services, and 24 hour/day care and supervision involving shifts of direct care workers who serve all six of the group home residents. My sons are nevertheless afforded the right to a Person Centered Plan (PCP) and an Individualized Plan of Services (IPOS) that assure services suitable to their needs as required by Michigan law. I know several families, however, with adult family members who have severe DD who have chosen to use Self-Determination arrangements and are satisfied with them.

Comment period extended on Michigan Self-Determination Policy

MESSAGE FROM LYNDA ZELLER
Deputy Director, Michigan Department of Community Health
 
"We are extending the public comment period on the proposed revisions to the Self-Determination Policy until 5 pm on May 11 [2012].  Since we are experiencing difficulties with the state E-mail account for Ellen Sugrue Hyman, please send your comments to Cynthia Gilpin at gilpinc@michigan.gov.  If you sent comments to Ms. Hyman after April 17, they may have become lost so you are advised to re-send to Ms. Gilpin. We apologize for any inconvenience this causes."

MDCH Proposal to change Self-Determination Policy and Practice Guidelines

Update: The comment period has been extended until 5 p.m., May 11, 2012. The e-mail address for sending in comments has not been working properly. Send comments, including those that were sent to Ellen Hyman after April 17, to Cynthia Gilpin at gilpinc@michigan.gov .

Comments due Friday, April 20, 2012

Self-Determination is a method of delivering services to people with developmental disabilities that allows individuals to have more control over the services they receive, the people who provide the services, and the expenditure of public funds to pay for the services. This is an option that must be made available by CMH agencies for anyone who desires it, including people with the most severe disabilities who have guardians who speak on their behalf. People who want and need a more traditional program of services may choose not to use Self-Determination.

The Michigan Department of Community Health (MDCH) proposal to revise guidelines for Self-Determination includes encouragement of Community Mental Health (CMH) agencies to police guardians and circumvent their authority to make decisions. Guardians are appointed by the probate court for adults who are unable to make decisions for themselves in all or some areas of their lives. The vast majority of guardians are parents or other family members of adults with developmental disabilities who have intimate knowledge of the needs and preferences of their family members.

Among other things, the proposed guidelines say that CMH must "…support  individuals who have guardians who are using arrangements that support self-determination to identify an independent advocate."(emphasis added). Presumably, you could find yourself at a Person Centered Planning meeting with an advocate you do not know and did not choose to be there, representing the interests of your family member.  The proposal goes on to say that when guardians "restrict the individual's rights", CMH can terminate the self-determination arrangements, even though the individual and the guardian have chosen this method of service delivery.

If adopted, this wording would become part of the contract language for CMH agencies with the state.

This is from Tom Bird of ddAdvocates of Western Michigan: 

"…DCH [Department of Community Health] has repeatedly tried to intervene in the Court's authority over guardianship. The Legislature has, in the past, issued 'boilerplate' restrictions on DCH using it's funding to usurp guardianship. Could this just be one more misguided attempt to assert the DCH 'superior wisdom' on services over the wishes of the family and guardians of those who may not be able to communicate their wishes effectively for themselves? The Bureaucratic arrogance of the 'professionals' who think they know better than everyone else must be tempered by the rights of the consumer and his/her guardian. This is the core principle of PCPlanning and 'choice' of the consumer in service delivery. It should apply equally in the area of self determination.

"Guardianship, when necessary, is firmly established in the state Mental Health Code as a matter under the authority and oversight of the Judicial Branch. If there are cases of guardianship abuse or neglect, then the proper manner of handling that is to bring it to the Courts to decide the matter, not for the DCH to overrule the guardian unilaterally. Watch out!!!"

Resources for understanding and commenting on the MDCH proposals: 

• Self-Determination Guidelines with changes in "Bold": Pages 10 - 13 are specifically about guardians. 
• Summary of proposed changes 
• "Proposed Policy diminishes role of guardians…" from 2010 in The DD News Blog. This was a similar attempt to change the Self-Determination Guidelines in 2010. Here the emphasis was on encouraging CMH agencies to challenge guardianships in court when CMH determined that guardians were not living up to their responsibilities.
•  Links to all sections of Michigan's guardianship law for adults with developmental disabilities

Comments are due tomorrow (!), 4/20/12. If you have comments prepared, send them to Ellen Sugrue Hyman . E-mail the Director of the Department of Community Health Olga Dazzo asking that the comment period be extended so that more families have a chance to weigh-in on these proposals. If the MDCH does not extend the comment period beyond tomorrow, send your comments anyway, but to more people. Here are others who need to hear from you: Lynda Zeller, Deputy Director of Mental Health and Substance Abuse Administration; state Representatives and Senators from Washtenaw County; Governor Rick Snyder at Rick.Snyder@michigan.gov

I will try to post my comments on the guidelines tomorrow.

More Comments on Michigan's Dual Eligibles Plan

Below are links to comments on the Michigan proposal for "Integrated Care for people who are Medicare-Medicaid Eligible." The people commenting all have family members who have been served by the Community Mental Health (CMH) system as well as professional or volunteer experiences that give them insights into the workings of the system that serves people with developmental disabilities and mental illness.

Rita Bird, a parent and Ottawa County CMH  Board member, gave testimony to the Michigan Senate Appropriations Subcommittee on the Department of Community Health in March 2012 on the  Dual Eligibles plan.

She raises questions about the cost of implementing the dual eligibles plan: "Good judgment demands that cost estimates be as accurate as possible in order to determine whether the Plan is financially sound and sustainable. "..

She is also concerned about "general confusion about the meaning of the plan and the state's intent in implementing it":

"What happens when the two systems [physical health care and mental health services] are in competition for the same dollars?"

"Who makes the final decisions on which services are covered, which services have priority, who delivers the services, who receives the services, and who has 'veto power over services that may be deemed just too expensive to provide to a particular population or to someone who is deemed too disabled, to sick, or too old for the expense?"

Rita's recommendations to the legislature are:

• Do not allow mental health funding allocations to be co-mingled with physical health care losing vital dedicated funding allocations for those with mental, cognitive, and physical disabilities. 
• Insist on the assurance that all current mental health services including enhanced Waiver services be continued and monitor waiver negotiations between DCH and CMS. 
• Delay approval of the Proposed DE Plan until it can be presented in its final form following CMS negotiations.
• Insist on a complete “Carve Out” of the existing mental health system structure until it can be accurately scrutinized for any cost savings and unnecessary bureaucratic weight. This has not been done.
• Have the mental health system continue to serve the DD population.
• Do not allow their services to be included in Long Term Care.

Marianne Huff, Executive Director of Allegan County Community Mental Health Services (ACCMHS) also comments on "the lack of sufficient detail to know whether or not there is a reason to be concerned."

She believes that " persons with disabilities have not been afforded an equal opportunity to learn about the Plan nor have persons with disabilities been given equal opportunity to participate in public discussions regarding the Plan."

She says, "...it is our contention that the stakeholder involvement process was limited and not truly accessible to those who comprise the greatest number of the almost 198,644 Dual Eligibles in the state of Michigan:  Qualified Persons with Disabilities."
 

Of further concern is "the lack of detail in the Plan as it applies to the current CMHSP system as a provider network and county-based system of specialty supports to persons with disabilities...It is difficult to speculate about the rationale for not including a more detailed explanation about the role of CMHSPs, but there is a sense that the Plan is designed to eventually eliminate the county-based community mental health system. "

Ed Diegel is from DD Advocates of Wayne County. In his comments, he emphasizes the importance of assuring that funding intended for people with DD is not used for non-DD programs, that inappropriate uses of these funds should be prohibited, and that the rights of the DD must be protected.

He also makes the point that in Wayne County, "when two of three Major Care Provider Networks (MCPN’s) unilaterally cut funding to programs for the Developmentally Disabled (with no corresponding reductions in State funding), the cuts resulted in service reductions and health and safety issues across the county. The conclusion is that there is no ‘administrative excess’ in the DD system for funding services for other populations."

On physical health care, Ed says that many people with DD who have complex medical needs may  exhibit symptoms different than the normal population or they may be presented in a different way.  He also notes that many people with DD  have doctors in more than one medical center.

He is also knowledgeable about  business operations of public agencies, service providers, and contractors. He emphasizes the need for planning for additional personnel that may be needed and re-defining industry practices to guard against the following:

• Excessive overhead assessments from contracting agencies at every level. i.e. Wayne County assessments for contracts that include kick backs and favoritism and excessive buy out provisions included in the over all overhead assessment
• Excessive reserves – recently the Michigan Attorney General sued the Federal Government to allow Blue Cross and 10 or 11 other Michigan Insurers to accumulate excessive reserves for its Michigan business (more than the 25% the Federal Govt allows).
• For-profit and non-profit company returns must be uniformly reported to assure against excessive profit taking. For instance, Health Net, a California Medicaid insurer shares are up over 64% since Oct 3, 2011 on news it will get a portion of the California dual eligible business!!

My comments on the plan are here .
 
Comments on the state plan to the Michigan Department of Community Health (MDCH) were due on April 4th, 2012, but comments can be submitted anytime to this email address: Integratedcare@michigan.gov 

This is the dual eligibles website for more background information on the plan.

If you have comments, be sure to let your legislators know. After the state submits its draft of the plan to CMS (Centers for Medicare and Medicaid Services), there will probably be negotiations with CMS that may result in changes. Fortunately, language was recently placed in an appropriations bill that requires the MDCH to submit the final draft of the dual eligibles plan to the legislature before the final version is submitted to the CMS.

Michigan's Plan for Dual Eligibles: Comment on Stakeholder Input

The Michigan Department of Community Health (MDCH) scheduled many forums and meetings on the proposal. There were a large number of participants in the process and a high degree of interest among groups affected by the plan. One of the barriers to access to these public forums, however, was that information was primarily available to people who have Internet access and are comfortable using computers to receive information and submit comments. People who are elderly, as well as those who have physical and cognitive disabilities, have more problems accessing and relaying information on the Internet than the general population. Some Community Mental Health agencies managed to get out the word about the meetings and the proposal through print mailings, but I did not see any statement by the MDCH that this was required or encouraged.

At various times participants in state forums and work group meetings were told that certain subjects would not be part of the discussion, presumably because the MDCH and the state Medicaid agency had already made up their collective minds on these aspects of the Dual Eligibles plan. Some of these topics were among the most controversial parts of the plan including:

• At the first meeting for work group members on November 9, 2011, a statement was made that the work groups would not be considering the “entities” that the state would choose to administer the plan, even though many of the participants viewed the selection of these entities as crucial to whether the plan could succeed and whether individuals served by the plan would have any influence over the “entity” making decisions that could significantly affect their lives.
• The idea of allowing beneficiaries to opt into the plan was dismissed at the outset by the state in favor of passive mandatory enrollment followed by the option to opt out of the plan.
• Also ruled out of the discussion was the idea of the state taking a less radical approach to integrating care such as proposing a pilot program to test ideas before full implementation of the proposal.

 Participants in the public meetings did express views on these topics, but the state cannot claim to have encouraged extensive stakeholder participation while at the same time it was attempting to limit discussion of some of the most controversial aspects of the proposal.

Michigan's Plan for Dual Eligibles: General Comments

In drafting the final version of Michigan’s proposal for “Integrated Care for People who are Medicare-Medicaid Eligible,” it is clear that the state was listening to criticism of the original plan by people currently covered by the community mental health system, including people with developmental disabilities. The state’s response, however, was to use language more familiar and reassuring to the CMH population for parts of the plan affecting mental health services without removing the uncertainty of the original proposal or filling in the details in how the plan will be implemented and paid for. The revised plan still does not explain why the state chose such a radical approach to changing the current system of care for dual eligibles.

From my perspective, as the parent of two adult sons with severe developmental disabilities who need a high level of care to survive much less to thrive in a community setting, the uncertainty reflected in this document is alarming.

Budget reductions for FY 2013

It is likely that the 2013 budget for the Department of Community Health has already been approved by appropriations committees of the legislature with a $30 million reduction in spending for the Michigan Department of Community Health (MDCH) attributed to the Dual Eligible proposal (see page 28 of this presentation of the budget), even though the final draft of the proposal has not yet been submitted to the federal government for approval and won’t be fully implemented until June of 2014, according to the plan.

Where exactly are the spending reductions coming from?

State management of a federal program

Another baffling part of the proposal is that Michigan is voluntarily proposing to take on management of the Medicare system for the Medicare-Medicaid Eligible population, even though Medicare is a federally managed and paid-for program. Medicaid is already a state-federal partnership, funded by both the states and federal government, managed by the states, and regulated by the federal Centers for Medicare and Medicaid Services (CMS).

Of what benefit is it to the state and Medicare beneficiaries to take over management of a federal program?

State law v. the DE proposal

The Michigan Social Welfare Act (Section 400.109f) says that “…Medicaid-covered specialty services and supports shall be managed and delivered by specialty prepaid health plans [regional community mental health entities] chosen by the department of community health …The specialty services supports shall be carved out from the basic Medicaid health care benefits package…”

If Medicaid and Medicare funds are blended to pay for physical and mental health services of Dual Eligibles, then it appears that there is no Medicaid carve-out for mental health services for this population. Does the MDCH still maintain that the Integrated Care Plan can be implemented without changes to state law?

Michigan DCH sponsors additional forum in March

The Michigan Department of Community Health will host two public meetings in March 2012 to present its proposal for integrating care for people who are eligible for both Medicare and Medicaid:

Tuesday, March 20 from 1:30 to 4:00 PM at the Best Western Plus Hotel in Lansing (formerly Causeway Bay Hotel)

Thursday, March 29 from 1:30 to 4:00 PM at the Greater Grace Temple in Detroit

You are welcome to attend either meeting, where attendees will have an opportunity to ask questions and provide comments on the proposal.

The state’s proposal will be posted for public comment for 30 days beginning the week of March 5.

More information about the March meetings, including details on how to register to attend, will be sent this week.

To read the plan, go to the Integrated Care Website and click on "Integrated Care Proposal". The MDCH will receive comments on the plan for 30 days.

Forums on Michigan plan for Dual Eligibles planned for March 2012

Statewide Forums on the  Michigan plan for people eligible for both Medicare and Medicaid (Dual Eligibles) are sponsored by the Michigan Association for Community Mental Health Boards (MACMHB). The MACMHB is the state trade organization for Community Mental Health Boards. The organization is hosting eight regional forums for review and discussion of the state’s proposed plan for persons with Medicaid and Medicare eligibility. 

Representatives from the state Behavioral Health and Developmental Disabilities Administration will participate to answer questions and provide clarification on the impact of the plan for persons with psychiatric illnesses, substance use disorders and developmental disabilities. 

The proposed plan will be announced on March 5th, 2012.

Forum times and locations:

Metro
March 26, 2012 ~ 10am - 12:00pm
San Marino Club, 1685 E. Big Beaver, Troy

March 26, 2012 ~ 2pm - 4pm
Great Grace Temple, 23500 7 Mile Rd, Detroit 

Northern
March 13, 2012 ~ 2:30pm - 4:30pm
Munson Medical Center, 1105 6th Street, Traverse City

Central
March 19, 2012 ~ 2:00pm - 4:00pm 
Saginaw Valley State University, 7400 Bay Road, Kochville Township

Southeast
March 22, 2012 ~ 9:00am – 11:00am
CMH Authority of Clinton-Eaton-Ingham Counties, 812 E. Jolly Rd., Lansing

Western
March 22, 2012 ~ 6:30pm - 8:30pm
Hope Network Career & Education Center, 775 36th St., Wyoming

March 23, 2012 ~ 10:00am - 12:00pm
Ottawa County Complex, 1220 Fillmore St., West Olive

Upper Peninsula
March 23, 2012 ~ 9:00am - 11:00pm 
Marquette General Hospital, 580 W College Ave, Marquette

Media coverage lacking on Michigan's dual eligibles proposal

Here is an article from Domemagazine.com by John Lindstrom on the state's project to integrate "dual eligibles". These are people who are eligible for both Medicare and Medicaid which makes them elderly and poor, developmentally disabled and poor, mentally ill and poor, or some combination of all of the above. The plan would place their care under a single entity that would manage and finance their medical care, mental health care, and long term care. 

Lindstrom points out this issue has tremendous import on the lives of the over 200,000 people affected, but it is receiving almost no coverage in the media. The state was surprised by the reaction it has received from critics. Despite the government's assurance that services will not be taken away and that the state's intent is to improve patient care while decreasing costs, the critics don't believe it.

In addition to the lack of coverage of this issue, despite the large number of people who would be affected by it, the subject is difficult to talk about. It is complex and encumbered by impenetrable jargon. 

At least one reporter is attempting to make sense of this:

"What is indisputable though is the genuine worry by recipients and their families that their care will be dramatically and drastically affected by whatever changes are made. The changes the state makes wouldn’t amount to a set of inconveniences. Those changes could trigger a massive change of life for some of these recipients."