Wednesday, May 30, 2012

CMS-2249-P2 : CMS proposes new rule for HCBS Waivers

Here we go again! The Centers for Medicare and Medicaid Services (CMS), the federal agency that regulates Medicaid waivers for Home and Community Based Services (HCBS), is trying again to define "community" and place limitations on how HCBS funds may be spent. [The Michigan HCBS waiver for people with developmental disabilities is called the Habilitation Supports Waiver (HSW)]. This has been tried several times before, (see comments between April 27 - May 26, 2011 for the last attempt) The response from the public, much of it negative, was overwhelming. Public reaction has slowed down attempts by CMS to limit services and settings that may be funded by HCBS waivers.

Below is an email sent on May 23, 2012 from CMS explaining the rule. Although the rule specifically applies to a "Medicaid-funded delivery of services through 1915(i) and the Community First Choice (CFC) option", the email states that, "CMS has indicated that it intends to apply these rules regarding settings to all Medicaid HCBS programs, including Medicaid 1915(c) HCBS Waivers, so that it has the potential for impact beyond the scope of the 1915(i) and CFC rules."

I have not yet read the proposed rule, but there seem to be new twists and, as always, confusion. When the proposal was first publicized, it incorrectly stated that comments were due on June 4th, 2012. Comments are now due by July 2, 2012. They can be submitted on-line at or in writing to:

 Centers for Medicare & Medicaid Services, Department of Health and Human Services       
 Attention: CMS-2249-P2
 P.O. Box 8016
 Baltimore, MD 21244-8016

In any case, include the reference to the proposed rule: CMS-2249-P2

It is important that as many people respond to this as possible. Good luck in making sense of it. CMS warns that the document with the proposed rule is very long, but there are links to refer you to the most relevant parts. I will be commenting on this later.


Date: Tue, 22 May 2012 16:00:24 -0400
From: Lauren.Solkowski@HHS.GOV
Subject: Centers for Medicare and Medicaid Services Propose Rules on Home and Community-Based Services

Centers for Medicare and Medicaid Services Propose Rules on Home and Community-Based Services

Wednesday, May 23, 2012

The Centers for Medicare and Medicaid Services (CMS) recently announced proposed rules implementing State plan home and community-based services under Section 1915(i) of the Social Security Act. The proposed regulations are available online. This is a proposed rule which means that it is open for comments until July 2, 2012 (the Federal Register notice which contains the rules, incorrectly lists the due date for comments as June 4, 2012). Once the comments are reviewed CMS will likely issue a final regulation which means that this is the only chance to influence this important regulation.

These rules outline how the 1915(i) programs must be operated in states that choose to implement them. In addition, these rules describe the type of residential settings that will be considered appropriate for Medicaid-funded delivery of services through 1915(i) plans and the Community First Choice (CFC) option. CMS has indicated that it intends to apply these rules regarding settings to all Medicaid HCBS programs, including Medicaid 1915(c) HCBS Waivers, so that it has the potential for impact beyond the scope of the 1915(i) and CFC rules.

CMS has stated that they are very interested in hearing from the people who will be impacted most by these regulations – older adults and people with disabilities who use Medicaid-funded services and supports in the community. ACL has put together the following tips to help older adults, people with disabilities, their families, and other consumer advocates navigate the rulemaking process and make their voices heard. More information about the rulemaking process can also be found online.

CMS is inviting public comments on proposed language to establish the qualities for home and community-based settings.  CMS is specifically looking for feedback regarding several areas as outlined below:

  • The rule attempts to ensure that Medicaid Home and Community-based Services (HCBS) do not fund services in residential settings that restrict basic freedoms, except when there are health and safety concerns (see section 441.530(a)(vi)). Any restrictions of basic rights must be documented in the person centered plan. 
  • CMS is inviting comments on the qualities essential for home and community-based services, including in residential settings, as proposed in this rule, and whether additional or different characteristics should be included. (See section 441.530) 
  • Person-centered planning is the mechanism for ensuring that basic freedoms are preserved such as the ability to come and go as one wishes, retains basic rights to privacy, etc. The proposed requirements for person-centered planning are in section 441.665. 
  • This rule may allow providers to require a person to receive a particular service as a condition for residing in a setting owned or controlled by the provider (see paragraph 77 FR 26379 of the Preamble). 
  • The rule describes the requirements for states that wish to provide an option for self-direction (see section 441.674).
The Federal Register posting for this proposal is very long, and contains pages of discussion by CMS regarding the previous public comments they received and an explanation of the changes that they are proposing. The actual proposed rule language is included at the end of the document, which you can view here.
Stakeholders may submit comments via or in writing to CMS at the following address:
    Centers for Medicare & Medicaid Services, Department of Health and Human Services       
    Attention: CMS-2249-P2
    P.O. Box 8016
    Baltimore, MD 21244-8016

Wednesday, May 23, 2012

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.

Comments on Michigan's Plan for Dual Eligibles due on May 30, 2012

The Michigan Department of Community Health (MDCH) submitted its plan to integrate care for people who are eligible for both Medicare and Medicaid to the federal Centers for Medicare and Medicaid Services (CMS). Here is a copy of the plan sent to CMS by the MDCH with a few changes from the version that was made available on March 5, 2012.

You can also link to the plan online by going to the Website for the Integrated Care Resource Center. For comparison, there are also links to plans from other states that have been submitted to CMS.

Comments on the MDCH plan should be sent to CMS by e-mail to by 5 p.m., May 30, 2012. It is important that the CMS hear from you about what you think of the plan and how it might affect people you know who have developmental disabilities.

I read through the plan, but did not find any changes that would affect the comments I sent earlier to the MDCH in April.  

Here is background information on the Dual Eligible plan. Here are more comments on the plan.

Monday, May 14, 2012

Agricultural Communities for Adults with Autism

Mother's Day
According to the ACAA website, the "Agricultural Communities for Adults with Autism (ACAA) is a consortium of existing and in-formation organizations focused on sharing best practices and advocating for holistic, agricultural based employment and housing models for adults with autism."

The website continues with:

Our consortium was created to provide information to adults with autism, their families, academics, professionals, legislators, policy makers and others and as a portal to link to our member's sites and other relevant resources. We want to educate people about the common characteristics and differences in agricultural communities in the United States. Our website also exists to dispel the incorrect notion that agricultural communities are institutional, segregated congregate care models when, in fact, our members, residents, and day program participants are strongly woven into the fabric of their respective communities. We are non-urban, low density community based integrated models.
Agricultural communities are a terrific option for adults with autism in our community who prefer the choice of a non-urban, community based, active lifestyle that typically combines a variety of rewarding employment opportunities with quality, affordable housing and a wealth of activities in their local communities.
All of our communities report no openings and long waiting lists. Turnover is rare because we offer lifespan models. We are contacted daily by people from all over the world who want to have the choice of an agricultural model like one of ours. We give dozens of tours a year to interested adults and their families. We think the only way they will be able to access an agricultural model is to come together with others to create a model in their own area.
Creating a community is difficult but not impossible. Some of us are in formation but many have already created communities. Some have been in place for decades so the models are "time-tested" and successful.
A few weeks ago, I wrote a blogpost about Special Dreams Farm in St. Clair Township, Michigan.
Another project in Kalamazoo County, Michigan, is called Autism Agricultural Community Option for Residential Needs or AACORN FARM. This link is to a progress report on AACORN's organization. The ACAA website has links to many other groups who have successfully set up agricultural communities or are attempting to do so and other resources.

Wednesday, May 9, 2012

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.