Michigan: Important information for Washtenaw County DD adults using "self-determination"

This is an email from a parent who asked me to pass on this information to anyone who receives services from the Washtenaw County Community Mental Health agency using Self-Determination arrangements. To learn more, a contact phone number and email is provided below:

This email contains some very important information for individuals and their families who are receiving community living support services (CLS) using a self - determination (SD) arrangement in Washtenaw County. Was your CLS budget reduced in May of 2015? Are you currently not receiving an adequate level of CLS services? Are you paying out of pocket for transportation, CLS services, community activity, or training expenses?

If yes, you are probably aware that in 2015, CMH changed the way in which they determine the self - determination budget. Instead of basing the SD budget on the individual's needs, they have essentially "capped" the SD budget and are forcing everyone to fit into a budget based solely on the number of CLS hours. CMH previously determined individual needs in the Person Centered Plan (PCP) and then authorized them in the Individual Plan of Service (IPOS.)

There is no longer "individualization". Instead the number of hours determine the budget, not the needs for transportation, training, or community activity. Although you may not feel a huge impact at the present, in the future if you or your loved one needed additional supports, such as double staffing due to an injury, there would be no additional funds or method to accommodate the need using self-determination. This method of calculating self- determination budgets is contrary to federal law and just plain wrong.

You do not have to accept this. If you did not file an appeal in May of 2015, you can still join other families in Washtenaw county who are fighting CMH to revert to the former, correct way of determining the SD budgets based on individual needs and medical necessity.

There is currently a lawsuit against Washtenaw CMH, not for monetary damages, but to force them to follow the law and perform the budgetary process correctly. This may greatly impact us and our loved ones in the future, You can join the lawsuit at no expense to you or your loved one.

For further information please call 734-665-7303 or email washtenawsd@icloud.com.

Thank you for taking the time to consider helping all the 150+ families in Washtenaw County who are affected by this.

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From The DD News Blog:

See also, Michigan Medical Necessity Criteria for Medicaid-funded services.  

Take note of the last paragraph: "A PIHP may not solely deny services based solely on present limits of the cost, amount, scope, and duration of services. Instead, determination of the need of services shall be conducted on an individualized basis."

The MI Dept. of Health and Human Services offers guidance on self-determination policy on this Website.

See also Self Determination Policy from 2012 from the MI Dept. of Community Health (now the MI DHHS).

President's Committee for People with ID : Draft Agenda for 11/9 & 11/10/15

This is a Draft Agenda for the 11/9 and 11/10/15 meetings of the President's Committee for People with Intellectual Disabilities.

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Draft Meeting Agenda
November 9-10, 2015

The Holiday Inn® Washington - Capitol Hotel
550 C Street, S.W.
Capitol Ballroom
Washington, D.C. 20024

Toll Free Dial-in Number:         888-469-0957
Public Audiences’ Passcode:      8955387

Day One: Monday, November 9, 2015
9:00 a.m. – 9:05 a.m.        Greetings and Introduction of PCPID Chair
Aaron Bishop, Commissioner, Administration on Disabilities
Designated Federal Official (DFO),President’s Committee for People with Intellectual Disabilities

9:05 a.m. – 9:15 a.m.        Opening Remarks, Call to Order, and Introduction of Special
Guests Julie Ann Petty, Chair President’s Committee for People with Intellectual Disabilities

9:15 a.m. – 9:20 a.m.        Approval of Agenda and Minutes (August 3-4, 2015)
PCPID Chair and Members

9:20 a.m. – 9:30 a.m.            Self-Introductions: Citizen Members and Ex officio Representatives

9:30 a.m. – 9:45 a.m.    Updates
Coleman Institute for Cognitive Disabilities Conference
Julie Petty, Aaron Bishop and MJ Karimi

National Council on Disability Quarterly Meeting - Dan Habib

9:45 a.m. – 10:15 a.m.    Discussions and Presentation of the PCPID Wiki - Further Instructions on Recording the Videos - Jack Brandt, Dan Habib and MJ Karimi (David O’Hara?)

10:15 a.m. – 10:30 a.m.    BREAK

10:30 a.m. – 11:30 a.m.    Topic #1: Disability as a Civil Rights Issue and Dimension
        of Diversity   

Curtis L. Decker, JD (to be introduced by Lisa Pugh)
Executive Director
National Disability Rights Network
Washington, DC

Tawara Goode (to be introduced by ________ )
Director, National Center for Cultural Competence
Georgetown University Center for Child and Human Development
Washington, DC

11:30 a.m. – 12:00 p.m.    Question and Answer (Q/A) Session

12:00 p.m. – 1:00 p.m.    LUNCH (on your own)

1:00 p.m. – 2:00 p.m.        Topic #2: Ending Segregation in Education and Beyond

Ending Segregation in Education and Beyond

Erik Carter (to be introduced by Dan Habib)
Associate Professor, Department of Special Education
Vanderbilt Peabody College
Nashville, TN

Ending Segregation in Education and Beyond (Self-Advocacy)

Julia Bascom (to be introduced by Liz Weintraub)
Deputy Executive Director, Autistic Self Advocacy Network (ASAN), Washington, DC

2:00 p.m. – 2:30 p.m.    Q/A Session

2:30 p.m. – 2:45 p.m.        BREAK (15 minutes)

2:45 p.m. – 3:45 p.m.        Topic #3: Self-Determination and Supported Decision-Making
       (Self-Directed Life)

Robert Dinerstein (to be introduced by Sheli Reynolds)
Professor of law
Associate Dean for Experiential Education
American University, Washington College of Law
Washington, DC

Morgan Whitlatch, JD (to be introduced by Betty Williams)
Legal Director
Quality Trust for Individuals with Disabilities
Washington, DC

    Ryan King (to be introduced by Morgan Whitlatch)
    Self-Advocate
    Washington, DC
   
3:45 p.m. – 4:15 p.m.    Q/A Session

4:15 p.m. – 4:30 p.m.    Recapping the Day’s Discussions and Providing Guidance
   and Directions
Julie Petty, Chair
Aaron Bishop, Commissioner and DFO

Day Two: Tuesday, November 10, 2015

9:30 a.m. – 9:35 a.m.    Call to Order
Julie Ann Petty, PCPID Chair

9:35 a.m. – 11:00 a.m.    Discussions on the Potential Topics
    Voting on the Potential Topics
PCPID Members (Full Committee)

11:00 a.m. – 11:15 a.m.    BREAK 

11:15 a.m. – 12:15 p.m.    Development of Draft Statements and Recommendations for
  2016 Report to the President
PCPID Members (Full Committee)
 
12:15 p.m. – 1:15 p.m.     LUNCH (on your own)

1:15 p.m. – 2:15 p.m.    Approval of Draft Recommendations of 2016 Report to the President - PCPID Members (Full Committee)

2:15 p.m. –2:30 p.m.        Summary of Deliberations, Proceedings, and Next Steps
Julie Petty, Chair
Aaron Bishop, Commissioner and DFO
PCPID Members (Full Committee)

2:30 p.m.    Suggestions for Improvements (Evaluation Form) and Adjournment
    The completed form should be submitted to staff on the second day of the meeting
 
Happy Veterans Day

Home Care Rule to go into effect

New wage protections for home care workers will go into effect soon and will have an impact on consumer-directed programs. In Michigan, this is known as Self-Determination, an option that must be made available to recipients of Medicaid-funded services through the Community Mental Health system. (Other more traditional service options must also be available.) Self-determination allows consumers flexibility in hiring their own direct care workers. Similar programs are offered in other states.

National disability rights organizations have put together a fact sheet describing the rule and exemptions from it. It will most likely affect consumer-directed programs, which allow the person receiving services to hire his/her own worker (oftentimes family members or close friends) and direct the care the worker provides, and shared living programs where the consumer and provider live together.

Action Steps recommended to prevent cuts in services:

    •    Make sure your state is aware of and preparing now for the new home care rule to take effect.
    •    Push your state to analyze which programs the rule affects and what the budget impact will be for these programs.
    •    Advocate for additional funding in impacted programs.
    •    Make sure your state does not comply with the rule in ways that cause harm to consumers and workers.
    •    Ensure that your state uses Medicaid to help with additional costs but without impacting individuals access to services.
    •    Do not allow your state to abandon consumer-directed programs.
    •    Make sure your state educates individual consumers about the rule even if the state is not a “joint employer” in the program.

For more information, see the Fact Sheet and Action Steps.There are a wide array of consumer-directed programs. These documents provide details on which are affected by the new rule and which are not. See also The DD News Blog.

Washtenaw ACA on rate reductions for self-determination direct care workers

On July 1, 2015, Kathy Homan, President and CEO of Washtenaw Association for Community Advocacy, commented to the Washtenaw County Board of Commissioners regarding the decision by the Washtenaw Community Health Organization (WCHO) to reduce the hourly rate of pay for direct care workers under self-determination living arrangements:


“In May of this year, CSTS reduced the hourly rate of pay for Self-Determination budgets and removed all additional line item allowances from all [Medicaid] waiver recipients using self-determination. This reduction has decreased, if not ceased, the ability for people with developmental disabilities to be included in their community. The rate reduction was done with no input from the community and in violation of The Centers for Medicare and Medicaid (CMS) Budget Authority Process in the Habilitation Supports Waiver application, as stated in the letter from Michigan Department of Health and Human Services that was sent to the WCHO on June 4, 2015. I spoke with CMS after receiving a copy of this letter and confirmed that the violation to the Authority Process also included all other Home and Community-Based Service Waivers. This same letter stated that 'As a result, we are requesting that the WCHO reverse this decision immediately and retroactively to May 15, 2015 for all SD and choice voucher arrangements effected by this action.'

"The WCHO’s response to MDHHS, dated June 15, 2015 states '1. In coordination with the Washtenaw CSTS Clinical Team, we are collaborating with the individual and/or guardian to review the Individual Plan of Service (IPOS) and the Self-Determination budget. Upon review with all parties, the IPOS will be reviewed and signed off on by the individual and/or guardian and the CMHSP.' '2. Through the completion and signature on the updated IPOS, each individual and/or guardian will be provided Adequate Notice of Rights.' It also states that the WCHO will attempt to negotiation a solution locally. Should a solution become unattainable, WCHO will ensure individuals are provided assistance with filing a Medicaid Fair Hearing. We believe the WCHO response does not comply with the letter from MDHHS and is considered by some families as a bullying tactic.

"Self-determination is a policy through the public mental health system that is to be made available to any person receiving services through PIHPs and CMHSPs. The five principles of self-determination are Freedom. . . to plan a real life, Authority. . . over your resources, Support. . . . for building a life in your community, Responsibility. . . to the wise use of funds, and Confirmation…of the important roles that individuals must play in a designing systems.
 
"In October of this year, the Washtenaw County Board of Commissioners will have more oversight for CSTS. We ask that you include people with developmental disabilities and their families on the Community Mental Health Board so nothing again is ever decided about them without them." [emphasis added]

[The MDHHS is the Michigan Department of Health and Human Services, a new department that merges the old Department of Community Health and the Department of Human Services.]

2nd Town Hall Meeting on Washtenaw County DD Services - 5/7/15

This was a 2nd meeting to answer questions about services for people with developmental disabilities provided by the Washtenaw County Community Mental Health (CMH) agency.  The subject of the meeting was the review of Community Living Services provided by CMH and pay rates for people using Self-Determination. The meeting was attended by about 50 people at St. Luke Lutheran Church in Ann Arbor on 5/7/15. 

Handouts included:
 
The Washtenaw County Behavioral Health Task Force Report Frequently Asked Questions
 
Community Living supports Frequently Asked Questions

Self-Determination: Frequently Asked Questions on pay rates

[The Washtenaw Community Health Organization (WCHO) is currently the name of the CMH agency for Washtenaw County. This will be changing in October 2015 when the agency is reorganized and becomes a CMH agency controlled by county government.]

For further clarification on how changes may affect you or your family member, contact your supports coordinator or other members of the team assisting you with CMH services.

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This was mostly a question and answer session, with a lot of questions about the budget for the WCHO that has a $3.8 million deficit out of a total of over $80 million. 

The WCHO has given assurances that the amount, duration, and scope of services to individuals will not be cut. However, from the last meeting it was clear that the Individual Plans of Service (IPOS) will be reviewed to assure that Medical necessity criteria are being applied. Services can be reduced if the WCHO can justify it on the basis that they do not meet criteria for medical necessity. [This has always been true for Medicaid services. One question to ask is what has changed, if you are being told that a service no longer meets the medical necessity criteria?]

Question: If this is a budget problem, where is the budget being cut? Answer: There have been staff changes and many positions will be left open. Presumably, costs may be cut by finding services that are determined to not be medically necessary. The WCHO advises people to work with their clinical team and their fiscal intermediaries to handle changes. 

Self-Determination direct care providers will receive lower rates set by the PIHP (Prepaid Inpatient Health Plan) [PIHPs are regional administrative agencies that pass on Medicaid funds to local CMH agencies] - the CMH Partnership of Southeastern Michigan. Previously,  administrative fees, workers compensation, and other charges were supplemented with other funds, but this will no longer be the case.

Question: Is the Message that Self-Determination is being eliminated? WCHO: No, the agency is still offering this as an option. [The main concern, however, is that a reduced pay rate could make it more difficult to hire and retain workers] Individuals may choose to go back to a more traditional way of providing services through the CMH with less individual control of how or by whom services are provided. 

Medicaid Funding:
 
Ironically, the improving economy leads to less federal funding for medicaid because federal Medicaid matching funds decrease. CMH has done better when the economy is poor.  

There are 33,000 Medicaid enrollees in Washtenaw County. Capitation is the part of funding available that is conditioned on a set amount per person.

Healthy Michigan is Michigan’s version of Medicaid expansion under the Affordable Care Act. It covers people with incomes at or below 133% of the federal poverty level ($16,000 for a single person or $33,000 for a family of four). this means that there are a lot more people covered by Medicaid, many of whom have needs for mental health services, but the rate paid is lower under Healthy Michigan than that paid for people already qualifying for regular Medicaid. This results overall in less funding for people needing mental health services, but more people needing these services.

Comment: If we spend less now, less funding will be available in the future to the extent that it is based on current spending. WCHO: The IPOS process will not change.

Comment and Question: Are Cuts expected in future years? Are we going toward a system that gives a given sum of money to families ($20,000/year?) to spend as they choose?

Question: When rate changes for Self-Determination were contemplated, why wasn’t the community brought in? Answer: Decisions were made in public meetings of the PIHP with time allowed for public comment. No special announcements were made. 

Complaint: The rate change is a done deal, that we are being informed of, but we were not included initially in making the decision.

Question: Who is the leadership for the WCHO and why were we not being well-represented when decision to lower rates was decided? [The higher cost of living in Washtenaw County should be taken into account.] Are the people making the decision elected?  Answer: The WCHO was represented by the Executive Director and others hired by the WCHO board. The Board is not elected. [It does include people with disabilities and family members of people with disabilities.]

Question on “Goods and Services” for Self-Determination: Can unused Goods and Services money be used to fill in the gaps? Answer: WCHO is not sure. 

[FYI: “The purpose of Goods and Services is to promote individual control over, and flexible use of, the individual budget by the HSW beneficiary using arrangements that support self-determination and facilitate creative use of funds to accomplish the goals identified in the individual plan of services (IPOS) through achieving better value or an improved outcome. …A Goods and services item must be identified using a person-centered planning process, meet medical necessity criteria, and be documented in the IPOS [Individual Plan of Service]” This is from the Michigan Medicaid Provider Manual, page 979 of the PDF file that is available on-line. I have been told never to click on print when looking at this document. It is 1,840 pages long.]

Question on the Children’s Waiver: This is a state-run, fee-for-service waiver, with the funding coming from the state. So why is the rate for those worker’s being reduced? Answer: The WCHO uses General Fund dollars [these are state funds that are not designated for a specific purpose such as education, transportation, corrections, etc.] to supplement the rate if it is different than what the state allocates. General Fund dollars now available for the WCHO is less that $1million, a very small amount compared to what is needed to maintain services to people relying on general fund dollars.
 
WCHO Board and Committee Meetings for 2015

CMH Partnership of Southeastern Michigan meeting information

Corrections and comments welcome!

Summary of 4/14/15 meeting on community living services in Washtenaw County, MI

The 4/14/15 meeting in Ann Arbor was sponsored by the Washtenaw Community Health Organization (WCHO) and Community Supports and Treatment Services (CSTS) to discuss the future of community living support services. These local Community Mental Health (CMH) agencies provide Medicaid-funded services to people with disabilities, including people who are developmentally disabled and mentally ill and their families. 

The meeting was attended by about 100 [make that 180!] people eager to hear whether the WCHO [facing a budget deficit of $3.8 million] and CSTS had plans to cut services that allow individuals and their families to survive and thrive in community settings.

The meeting began with a PowerPoint presentation on “Utilization Management”, a fancy term for assuring that public funds are spent for the purposes intended by law and policy. The full presentation can be linked to here on the WCHO Website. [Click on “Town Hall Announcement” and then “CLS PowerPoint Presentation”] . The emphasis was on “medically necessary” services and a plan to review and evaluate Individual Plans of Service (IPOS’s), looking at those plans with the highest utilization rate first. These reviews may or may not result in cuts to services for individuals. 

There was nothing new as far as CMH agencies' obligation to be fiscally responsible and to provide Medicaid services that are "medically necessary".  Here is a blog post from The DD News Blog with the definition of medical necessity. The definition does not limit recipients of services to what would ordinarily be considered strictly medical services. It includes services to maintain or improve functioning and allow a person to live in the community.

As is usually the case, the most interesting part of a public meeting is the public and the questions and observations of people who went out of their way to attend the meeting. Here are some of the issues that were raised by the crowd:

The letter that went out to recipients of services under “Self-determiniation” arrangements announcing a decrease in the pay rate for direct service providers: 

• This was not the main topic of the 4/14 meeting, but the explanation for decreasing the pay was that Washtenaw County wants pay rates to conform to rates in the other counties in the 4-county affiliation of the Community Mental Health Partnership of Southeast Michigan. 
• Someone pointed out that there is no requirement that pay rates for every county be the same and that Washtenaw has the highest cost of living in the four-county region.  
• It is ironic that pay rates for direct service providers under self-determination living arrangements are being cut, while the Federal government through its rule on Home and Community-Based service settings encourages these kinds of living arrangements over congregate care and is applying pressure on states to move in this direction. Cutting pay rates is a sure way of making it harder for individuals to hire direct care staff who are competent and reliable.

The CSTS PowerPoint emphasizes the success of the WCHO and CSTS in cutting hospitalization times for people with mental illness. An audience member spoke of talking to family members of people with severe mental illness who say that hospital stays are way too short and do not allow people to adjust to new medications and to transition back to the community.

There were also complaints that families were already being threatened with service cuts, including people needing care and supervision 24 hours a day. Some were told there was no appeal of service cuts, even though there is both a local and state appeals process required by law. For more information see Recipient Rights and page 24 and 25 of the Guide to Services.

More meetings:

Check the announcements page of the WCHO Website for more information on a meeting scheduled for May 7, 2015 at St. Luke Lutheran Church in Ann Arbor.

The WCHO Board of Directors meets on the third Tuessday of every month.

The new pay rates for direct care workers for Self-determination go into effect on May 15, 2015, but there will be a meeting before that date to discuss concerns of consumers.

Michigan Self-Determination Guidelines Revised

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 Community Mental Health 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.

Last March, 2012, the Michigan Department of Community Health  (MDCH) issued proposed revisions to the Self-Determination Policy and Practice Guidelines. The proposal appeared to be designed as a blunt instrument to bash guardians and to remove them from the planning process for self-determination as much as possible. The vast majority of guardians for people with developmental disabilities are parents, other family members, or close friends of the person with a developmental disability.

Ignoring the jurisdiction of the Probate Court to appoint or remove guardians and to establish the legal disabilities of the person with a developmental disability that lead to the need for guardianship, the MDCH encouraged Community Mental Health agencies to police guardians and circumvent their authority to make decisions on behalf of their wards. The MDCH said that CMH must  "…support  individuals who have guardians … to identify an independent advocate," (emphasis added), presumably to protect individuals from their court-appointed guardians. To add insult to injury, the guidelines would have allowed CMH to terminate self-determination arrangements when an agency determined that the guardians "restrict the individual's rights."

Thanks to the efforts of ddAdvocates of Michigan and families and other individuals who commented on the proposed Guidelines, most of the guardian-bashing wording was removed. The new guidelines are a great improvement over the initial proposal.

I still believe, however, that 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.

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.

Bait and Switch: Do proposed CMS rules on person-centered planning undermine decision making by the person-centered planning team?

This is one issue that I did not cover in my comments  on the Centers for Medicare and Medicaid Services (CMS) proposed regulations [CMS-2249-P2] for Medicaid Home and Community Based Services (HCBS) waivers. Although the CMS explicitly endorses the use of person-centered planning in determining services for people using HCBS waivers, at the same time it takes away some of the authority of the PCP team to make decisions concerning the individual with a disability by allowing a "functional needs assessment" to determine clinical and support needs.

This is from background information on the proposed rules:

The person-centered service plan must identify the strengths, preferences, needs (clinical and support), and desired outcomes of the individual. The person-centered planning process is conducted in a manner that reflects what is important for the individual to meet identified clinical and support needs determined through a person-centered functional needs assessment process and what is important to the individual to ensure delivery of services in a manner that reflects personal preferences and choices. [emphasis added]

I think the most accurate translation of this is that a so-called "person-centered functional needs assessment process", probably a standardized state assessment, will determine the clinical and support needs of the individual. Although the individual will necessarily be the object of the needs assessment, there is no guarantee that the individual or his or her guardian will have any say in the identification of needed services. By the time the person-centered planning process occurs, the needs that will be written into a service plan will already be determined. The PCP process will be reduced to an exercise in self-expression by the individual who will be allowed to express preferences within the limits of the needs already determined, rather than allowing the individual and people who know and work with the person to determine what, when, where, how, and by whom the services will be provided.

Although in any program that uses public funds to pay for services, there is a need to determine overall eligibility for the program, but that is essentially an administrative function and should not be confused with the practical aspects of working out the details of what services will be needed and the conditions under which they will be provided.

The Michigan Developmental Disabilities Council submitted comments on this issue to the CMS. [Developmental Disabilities Councils are mandated by the federal Developmental Disabilities Assistance and Bill of Rights Act to advocate for people with developmental disabilities and to pass on federal funds in the way of grants to further the goals of the DD Act.] 

These are the comments  from the Michigan DD Council:

Under ‘Person-Centered Planning,’ it says, “A requirement for a person-centered functional assessment is set forth in the proposed rule which ensures that an objective assessment is the cornerstone for determining level of need.”

Michigan advocates do NOT support standardized functional assessment. State law requires that the Person-Centered Plan determines what a person’s needs are and what supports he or she should receive. When service providers have used a functional assessment, it has been typically to establish funding levels, which should only be determined by a person-centered planning process. Allowing such an instrument to overrule the Person-Centered Plan completely negates the PCP process. Advocates in Michigan have repeatedly opposed this over a period of many years. I understand that CMS does not endorse using functional assessment for this purpose, but experience tells us that, when it is used, it becomes a rate-setting process.

Other comments:

•    Too many professionals will use those tools to rationalize taking choices away from an individual. It is too often used as an excuse to allow someone else to totally control decisions for another person's life. A standardized test should never be used as an excuse to segregate or exclude someone. They should not be used to decide someone's competence or have a huge weight in major life decisions.
•    Standard assessment can be a way to impose the professional’s opinion on the person whose life it is. It becomes a barrier rather than assistance.
•    The major question is how a standard assessment process would interact with person-centered planning, because it is often used to overrule the PCP.
•    Assessment may not truly reflect a person’s wants versus identified and recognized needs and quality of life issues.
•    Assessment always implies that you know something that the person being assessed doesn't, and professionals feel obligated to use it regardless of the choice of the person.
•    When standard assessment has been used before, and in other circumstances, it has worked out badly for the person being assessed. Standard assessment can be a way to impose the professional’s opinion on the person whose life it is. It becomes a barrier rather than assistance.

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 #1: Self-Determination and Guardianship

On March 19, 2012, the Michigan Department of Community Health (MDCH) issued a request for comments on changes to the “Behavioral Health and Developmental Disabilities Self-Determination Policy & Practice Guideline”. As so often happens, the request for comments was not widely distributed among people directly affected by the proposed changes.  I read the proposed changes only three days before the end of the comment period and then distributed the request for comments to people on my e-mail list for Friends of the Developmentally Disabled. Other family groups and advocates for people with developmental disabilities did the same. Many requests were made to extend the comment period beyond the April 20th date in the initial request for comments. The comment period has been extended to May 11, 2012.


Here is a copy of my general comments with background information on Guardianship and Self-Determination. Here are specific wording changes that I recommended to MDCH.

My comments are my own observations and views on guardianship, developmental disabilities (DD), and Self-Determination based on what I hear from families and what I know about my two adult sons who have severe DD and profound Intellectual Disabilities (ID).

The Guideline uses the acronym PIHP/CMHSP that stands for Prepaid In-patient Health Plans and Community Mental Health Services Program. Both organizational structures are part of Michigan’s Community Mental Health system. In my comments, I refer to Community Mental Health or CMH, a more familiar phrase to most people, to include PIHPs and CMHSPs. I use the term Guardian to refer to a court-appointed legal representative of a person with DD who is found by the Probate Court to have mental and adaptive limitations that limit the individual’s ability to make reasonable decisions.

The proposed changes to the Guideline on Self-Determination appear to be primarily for the purpose of limiting the participation of court-appointed guardians of people with DD in the planning and implementation of Self-Determination. The changes would allow CMH and others involved in person centered planning to mediate perceived disagreements between the guardian and the ward and even to exclude an individual from participation in Self-Determination because of perceived disagreements with the guardian.  Changes would also require that CMH help individuals find  “independent” advocates to represent the person’s interests in planning when the individual already has a legal guardian.

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.