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.

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.