What you need to know about Michigan Due Process and Services for DD

Spring at last

I attended two presentations in the last 6 weeks by Stacy Coleman sponsored by NAMI (National Alliance on Mental Illness) of Washtenaw County, Michigan, and the Washtenaw Community Health Organization (WCHO). Stacy works for the WCHO and is a Medicaid Hearing Officer. She is an expert on Medicaid law as it pertains to people served by the Community Mental Health system. Her presentations on due process rights and mental health services for people with mental illness and developmental disabilities are always informative.

This was a refresher course for me (see the Friends of DD Newsletter from November 2010) and a reminder that many families of people with DD are not well-informed about their family member's rights, the availability of services, or the remedies afforded to Medicaid recipients who disagree with decisions made by their local CMH. It is not only a lack of information that is the problem, but the reality that many families are sometimes misinformed and misled by people within the CMH system.

Here are a few bits of information from Stacy's presentation that you need to know:

IN MICHIGAN, THERE ARE NO WAITING LISTS FOR SERVICES

Because of agreements Michigan made with the Federal agency that regulates Medicaid (CMS) that allows the state to have a managed care system for Medicaid-funded mental health services, there can be no waiting lists for services.

MEDICAL NECESSITY

Mental Health Services for people with DD must be"Medically Necessary". The same criteria apply to people with mental illness.

According to the Michigan Medicaid Provider Manual, individuals with developmental disabilities who are eligible for Medicaid are entitled to "medically necessary" supports, services, and treatment that are:

• Necessary for screening and assessing the presence of a developmental disability
• Required to identify and evaluate a developmental disability
• Intended to treat, ameliorate, diminish, or stabilize the symptoms of developmental disability
• Are expected to arrest or delay the progression of a developmental disability
• Are designed to assist the individual to attain or maintain a sufficient level of functioning in order to achieve his goals of community inclusion and participation, independence, recovery, or productivity.

The determination of medical necessity must be based on information provided by the person with a DD, the person’s family and/or others who know the individual, and clinical information from health care professionals. The determination must be based on a person-centered plan and made by appropriately trained developmental disabilities professionals within federal and state standards of timeliness. It must be "sufficient in amount scope, and duration of the services" and documented in the Individual Plan of Service.

Services "sufficient in amount, scope, and duration" need to be specified in the IPOS with as much detail as is necessary to meet the needs of the person.

Services may not be denied based solely on present limits of the cost, amount, scope, and duration of services. Determination of the needs for services shall be conducted on an individual basis.

WRITTEN NOTICE FOR ADVERSE ACTIONS

When you ask for a service (do this in writing to make sure you have documentation of the request), the CMH agency must give you a written notice if the agency decides:

• to deny or limit the service
• reduces, terminates or suspends the service, denies payment for a service in whole or in part, or fails to authorize a service

In most cases the CMH agency must give you advance notice of an "adverse" action 12 calendar days before the action takes effect, or they must give you notice at the time the Individual Plan of Service is completed.

MEDICAID HEARINGS 

You may ask for a state Medicaid hearing through the Michigan Department of Community Health if you do not agree with the decision of the PIHP (the WCHO in Washtenaw County). Go to the Michigan Department of Community Health website for more information and a "Request for Hearing" form.

Services must continue while a hearing decision is pending if you have asked for the hearing in a timely manner. See the WCHO website on hearings and appeals for more information.

Here is more on the WCHO regional Due Process and Appeal Committee with links to related documents including the Medicaid Provider Manual.

A user's guide to Community Mental Health, Washtenaw County

"I go to meetings so you don't have to."

It has been almost two years since I began attending meetings of the Washtenaw Community Health Organization (Washtenaw County's Mental Health agency) and its various committees. Very often I am the only "outsider" there when important decisions affecting people with disabilities and their families are made. Fortunately, there are consumers of mental health services represented on the Board, but it still tends to operate on the abstract level of policy and funding and does not necessarily take into consideration factors you might feel are important.

There are many ways to make your voice heard. Every WCHO Board and committee meeting begins with an opportunity for public participation where you can say (almost) anything you want - it does not have to be on the agenda or otherwise under consideration by the Board. The meetings are formally run and as much as I may want to insert myself into the conversation during the meeting, that is not how things work. I have to stifle that impulse and plan to come back to raise issues that I think are important. Of course, discussions with staff and Board members before and after the meetings are always possible, and attending meetings regularly is a good way to find out who does what and who to talk to when specific questions arise.

The Executive Director of the WCHO, Patrick Barrie, is a former Deputy Director for the Michigan Department of Community Health. He knows a great deal about state policy, funding, and the politics of mental health services. His reports to the WCHO Board are informative and interesting, especially if you have a geeky need to know how the mental health system works.

The WCHO Board meets on the third Tuesday of each month at the Learning Resources Center at 4135 Washtenaw Avenue, Ann Arbor, near the intersection of Washtenaw Avenue and Hogback Road. Some of the items discussed at recent meetings include the restructuring of the WCHO organization to fix problems with the decentralizing and fragmentation of services and functions of the organization in recent years. For instance, Community Supports and Treatment Services (CSTS) had become an independent publicly-funded provider agency, but now it is coming more under the direct control of the WCHO to improve efficiency and control over services. Another issue is that after years of encouraging a greater choice in service providers for consumers, there are now too many providers for the WCHO to monitor effectively and there are questions about the efficiency of contracting with so many small providers.

Committee meetings that might be of interest to consumers include the Program Committee that meets monthly and the Quality Management Committee that meets quarterly. One of the issues facing the WCHO is getting a handle on whether the programs offered are of value to consumers and of sufficient quality to meet their needs. Part of the reorganization of the WCHO will provide the committees with information they will need to make this determination. In addition, the Finance Committee approves and oversees contracts with the WCHO and focuses on funding issues.

The Affiliation Committee is one of the most interesting to me, as it involves Board members and staff from Washtenaw County plus the three other counties (Lenawee, Livingston, and Monroe) in the Community Mental Health Partnership of Southeastern Michigan. State issues concerning mental health funding and policy come up frequently for discussion. The state organization representing Community Mental Health Boards, the MACMHB, comes in for some criticism with many CMH Boards feeling that the MACMHB does not do enough advocacy on behalf of local CMH's and has become instead a mouthpiece for the Michigan Department of Community Health. The Affiliation is evaluating its role in the MACMHB and will be offering recommendations for improvement of the organization. The Affiliation Committee also approves policy changes for the recipient rights office and assesses the overall fiscal health of the four mental health boards.

The Recipient Rights Advisory Committee meets quarterly to go over reports that analyze incidents of abuse, neglect, and exploitation of mental health consumers. The committee takes into consideration special areas that need scrutiny such as the under-reporting of incidents by service provider staff and incidents in supported living (unlicensed) settings. This committee also serves as an appeals committee to hear appeals brought by or on behalf of WCHO recipients regarding Rights investigations. The recipient rights committee members tend to touch on basic issues that we are all concerned about - the safety and well-being of our family members wherever they are receiving services.

For information about the WCHO Board and committee meetings, check the Washtenaw County Calendar of Events. The calendar includes meetings for all county government boards and committees.

To receive information on Board and committee meetings prior to the day of the meeting, e-mail Suzanne Gondeck at gondeks@ewashtenaw.org .

No excuse for violations at Oakland County group homes

This article from The Detroit News, "Repeated violations found at Oakland County group homes", January 10, 2011, is all too familiar. Every year or so a local newspaper features a story about group homes that could just as well have been written last year or the year before that or ten years ago. The story goes something like this: Group home residents live in squalid conditions, are subjected to mistreatment by group home employees, and are neglected to the point where they wander off and get into serious trouble with the police and their neighbors. It is also not unusual for an employee to claim, as happened in this case, that he or she was fired for trying to bring problems to the attention of his or her supervisors.

There are many group homes that provide excellent care and have none of the problems cited in this article. When the best choice for a person is to live in a group home, I think the best care for people with severe developmental disabilities is provided in homes that have strong family involvement and oversight, community support from local churches or other community organizations, and whose management welcomes and encourages this support. What families have to worry about are the many group homes that provide adequate care, but not much in the way of a fulfilling life for their residents and homes that provide neither adequate care nor much of a life for their residents and end up endangering the health, safety, and well-being of the people who live there.

Licensed group homes are operated under strict rules to assure safety and the protection of residents' rights. The caseloads of licensing monitors, however, have been increasing, bringing into question whether monitors can adequately do their job. In addition, administrators in the Michigan Department of Community Health have stated that they want to eventually eliminate group homes as an option for people with developmental disabilities. It is difficult to believe that the State will do much to improve the quality of failing group homes when they would prefer that they disappear.

There are things that families can do to improve the living situation of group home residents.

The first line of defense to protect a resident of a group home is to have a good person-centered plan and service plan that describe in detail all the services the person needs and how they will be delivered. Many problems go back to poor planning. Furthermore the plan of services must take into account the preferences and choices of the resident that are so important for the person's happiness and satisfaction with his or her living situation.

Most of the rights of recipients of mental health services fall under these broad categories listed in the Michigan Mental Health Code:

1. A recipient shall receive mental health services suited to his or her condition.
2. Mental health services shall be provided in a safe, sanitary, and humane treatment environment.
3. Mental health services shall be offered in the least restrictive setting that is appropriate and available.
4. A recipient has the right to be treated with dignity and respect.

Any violation of these rights can be reported to the local Recipient Rights Office. In Washtenaw County, Recipient Rights can be reached at (734) 544-3000. Anyone can make a complaint to recipient rights, whether or not you are related to the person involved. As a complainant, you should receive a written response to your complaint, written updates on the progress of the rights investigation, and a written summary of the conclusion of the investigation and the actions that have been taken to correct the situation.

A Rights Complaint form is available here.

Adult Foster Care Licensing provides an extra layer of monitoring and oversight for group homes and deals with the most serious rights violations and safety issues.  These can involve the death of a resident, accidents or illnesses that require hospitalization, displays of serious hostility, self-inflicted harm or harm to others, and destruction of property. Also included in investigations are incidents involving the arrest or conviction of a resident and absence without notice.

If a resident has a guardian, the guardian must be notified in writing within 48 hours of an incident or event that triggers a licensing investigation. A licensing complaint form can be found here. In addition to the complaint form are rules for AFC homes and notice requirements when a complaint has been received.

AFC maintains a Website on licensed group homes. Look for Special Investigation Reports that go beyond routine licensing inspections for information that may indicate serious problems at a group home.

The best and most reliable monitors of group homes are family members and friends who drop in frequently, ask lots of questions, and do not let serious incidents go by without reporting them to the proper authorities.

Draft guardianship policy: Comment period extended

Michael Head from the Michigan Department of Community Health (MDCH) has extended the comment period for the draft policy on guardianship until October 31st, 2010.

Although the cover letter for the MDCH draft "Technical Advisory" said that all Community Mental Health stakeholders were encouraged to comment, most parents and many CMH Board members from around the state, had not seen it. If you have suggestions on how to improve the distribution of documents such as this from the MDCH, include that in your comments on the draft policy.

One suggestion would be for the MDCH Website for mental health issues to include a contact number or e-mail address for people wanting to receive these materials in the future.

Proposed policy diminishes role of guardians in Michigan

I am generally well-informed on issues affecting my developmentally disabled sons, but this took me by surprise. The Role of Guardians in Arrangements that Support Self-Determination for Individuals with Developmental Disabilities Technical Advisory (I'll simplify this and call it the RGASSDIDDTA) is a draft of a policy that was sent out for public comment in August 2010. It is addressed to all the Community Mental Health programs, consumers, families, advocates, and stakeholder's in Michigan's mental health system, but I doubt that many people are aware of it. I did not see it until last Friday and today was the due date for comments.

If you have not seen this and want to make your views known on guardianship for people with developmental disabilities, send an e-mail to Michael Head at the Michigan Department of Community Health (MDCH) in care of Ellen Sugrue Hyman at hymane@michigan.gov and ask that the comment period be extended beyond September 30 to allow families and organizations time to consider the impact this might have on their loved-ones. Even if the comment period is not extended, send in your comments anyway and let the MDCH know what you think about this.

The RGASSDIDDTA contains many references to law and policy that are difficult to check, especially ones from the Michigan Medicaid Provider Manual, a large and cumbersome document. References from law are mixed in with state guidelines and opinion, as if they all have equal weight. Some are taken out of context or are misleading. For example, there is a quote from the Honorable John Kirkendall that supposedly supports the idea that guardianship is not necessary to support people with developmental disabilities. Before he retired, Judge Kirkendall was the Washtenaw County Probate Court Judge who routinely granted guardianship to parents of adults with developmental disabilities. He signed the court orders for guardianship for both of my sons.

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My comments on the RGASSDIDDTA to the MDCH:

Danny and Ian are severely physically and mentally disabled. They are unable to communicate in any specific way or to care for themselves. They are not able to speak on their own behalf or to exercise their rights under law. For these reasons, my husband and I were appointed co-guardians for both of our sons through the Washtenaw County Probate Court.

Guardianship is an invaluable tool that protects my sons and others like them from neglect, abuse, and exploitation. With the authority that comes with guardianship, families are better able to monitor living situations and services, to assure that rights are respected, and to take action when things go wrong. Community Mental Health (CMH) agencies are not immune from making unwise and uninformed decisions about people with developmental disabilities. Sometimes a guardian who intervenes on behalf of their disabled loved-one is the only line of defense for a vulnerable person placed in harm’s way.

When a plenary or full guardian is appointed, the Probate Court must specify that the individual is totally without capacity to care for himself or herself. In the case of a partial guardianship, the court determines the areas that should remain under the control of the individual and specifies in what areas the person does not have the capacity to make decisions. This draft policy from the MDCH fails to recognize the responsibility and the authority of Court-appointed guardians to make decisions in areas where a person has “legal disabilities”. This and an earlier policy from 2003 (the MDCH Self-Determination Policy and Practice Guideline) are both flawed in this respect.

Self-Determination is a method of delivering services to people with developmental disabilities that allows the individual with a disability 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.

In any case, CMH agencies are obligated to use the person-centered planning process to develop an Individual Plan of Services. This process must promote community life and honor the individual’s preferences, choices, and abilities. When there is a real or perceived disagreement between the guardian and the individual, the draft policy wrongly assumes that the guardian is dismissing the “preferences, choices, and abilities” of the individual.

Many people with developmental disabilities, though certainly not all, have difficulty expressing themselves and their communication may be easily misinterpreted. If someone answers “Yes” to every question that is put to them, it would be wrong to interpret this as a definitive expression of a 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. Person-centered planning is a cooperative effort, but ultimately the guardian’s opinion is a stand-in for that of the individual in areas where the person is unable to make their own decisions. The agency can agree or disagree with the guardian and either side can pursue administrative or other legal remedies to resolve the dispute. But to limit access or restrict the use of Self-Determination by a guardian who is supposedly in conflict with the expressed goals of the consumer is wrong and discriminatory.

This draft policy encourages CMH agencies to use the most aggressive methods available for dispute resolution with guardians, who are most often parents, siblings, other family members, or family friends of the disabled person. Other than suggesting the use of mediation services, the policy leaves out other administrative remedies that must be available to settle disputes such as Medicaid fair hearings. Instead it suggests direct court challenges to guardianship, equating disagreement over the person-centered plan with a guardian’s failure to fulfill his or her responsibilities under the guardianship law. This does great damage to a process that is supposed to be a cooperative effort to design services that best meet the needs of a vulnerable person. Challenges to guardianship are legal and necessary in some cases, but to encourage the use of this legal tool to punish and pressure guardians to conform with the wishes of a local CMH agency is an improper use of these legal procedures.

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I sent copies of my comments to Janet Olszewski [ norris@michigan.gov ], the Director of MDCH, family organizations for people with developmental disabilities. and Senate and House Health Policy Committees. You might also send your comments to your state legislator and anyone else who might have an interest in this.

This is a copy of the Michigan Mental Health Code. Guardianship is covered in Chapter 6 beginning on page 87.

Here is an interesting court case where a CMH tried to have a guardian removed because "The current Guardian is not acting in the ward's best interest in the areas of health, social and vocational opportunities, and proper housing/residential." What did the guardian do to deserve this? The guardian complained about injuries her sister received in her group home, she was upset that no one was helping her sister with her laundry, and she brought her sister hot dogs at the group home when she didn't like the dinner that was being served. This is on the Website of Martha Churchill, an attorney from Milan, Michigan.

March 2010: News from the WCHO and the Recipient Rights Advisory Committee

I have been attending Washtenaw Community Health Organization (WCHO) Board meetings for most of the last year in an attempt to understand and follow changes in the agency during the current economic crisis. Very few outsiders attend these meetings—most of the participants and attendees are either Board members or staff from the WCHO or CSTS (Community Supports and Treatment Services). The Board deals with complex issues concerning money and policy that affect the people they serve but, in my opinion, their decisions are not always anchored in the realities of life that we and our family members face each day. The Board does best when we keep them informed and connected to how their actions affect our family members.

For example, at the end of last summer, there were plans afoot to contract out all the vocational and skill-building programs that were operated by CSTS, a public agency. This was part of the County Board of Commissioners move to close a huge budget deficit. Families went to the WCHO and the Board of Commissioners with heartfelt arguments for why the CSTS programs should not be eliminated or changed. Eventually the CSTS employees' union made concessions to the County Board, their employer, that preserved most of their jobs. Then, the WCHO decided to continue contracting with CSTS for vocational and skill-building programs without interruption. Another outside agency that provides supported employment and skill-building programs for other WCHO consumers, was going to be dropped by the WCHO, which would have caused disruption to the people served by that agency. The outside agency felt that the WCHO had made the decision with inaccurate information. The WCHO then decided to continue the contract without interruption. Not all policy and funding decisions work out as well as this one did, but it would never have happened if no one had spoken up.

WCHO Board funding outlook

During a Board discussion on WCHO funding, the Executive Director Patrick Barrie said that continued federal stimulus funding and Medicaid funds would help the agency (and the state) make it through the next six months. If the health care reform legislation makes it through Congress, there will be many opportunities to expand Medicaid funding and to take advantage of demonstration projects. This could avoid cuts that are under consideration by the Michigan Senate. If health care reform fails, there are other possibilities to consider, (passing out Prozac was suggested) but no one is very optimistic about any of these. [Health care reform did pass, so hold the Prozac for now.]

Recipient Rights Advisory Committee Report

The Recipient Rights Advisory Committee for the WCHO has worked on decreasing the number of complaints having to do with "Failure to Report". (If an employee of a WCHO programs fails to report a possible rights violation, that is in itself a violation of rights.) Through training of people who work in group homes, supported living situations, and in other programs funded by the WCHO, the Recipient Rights Office has emphasized the responsibility of employees to report rights violations that they see in their work with people served by the WCHO. There has been a dramatic increase in the number of rights violations reported, perhaps due in part to this emphasis.

There is concern by the Recipient Rights Committee in the large number of substantiated complaints in unlicensed supported living sites for people with developmental disabilities. There were 71 reported for the last fiscal year. Rights complaints in licensed group homes for people with developmental disabilities came in a distant second, with 26 complaints. Substantiated rights complaints increased 50% overall during the last fiscal year.

The Recipient Rights Advisory Committee believes that there should be further investigation of this problem. Some of the causes of the problem may be outside the scope of the Recipient Rights Office, however. For instance, when there are complaints that services are not suitable to the individual’s needs, it may be that Person-Centered Plans are not adequately addressing the needs of the people served. The cause of the problem may lie with staff training, lack of accurate information to families, misunderstanding of PCP requirements, etc.

The WCHO Board is interested in supporting the idea of further investigation into these problems, but asked that the committee come up with a more specific proposal.

The MDCH vision of the future

Lansing is a place I do not pretend to understand. Emanations from the Michigan Department of Community Health (MDCH) about its "vision" for people with developmental disabilities seem especially murky and at times far removed from reality.

On December 16, 2009, Michael Head, a Deputy Director at MDCH, met with the directors of the state's Prepaid Inpatient Health Plans (PIHPs). PIHPs are regional affiliations of Community Mental Health agencies. (Our PIHP is the CMH Partnership of Southeastern Michigan that includes the CMH agencies from Washtenaw, Lenawee, Livingston, and Monroe Counties.)

According the PowerPoint presentation of Mr. Head's talk, Michigan's "vision" for adults with developmental disabilities is for them to have the supports and services necessary to be healthy and safe and to successfully:

• contribute to their communities
• earn an income in a non-segregated community setting
• live in their own homes
• have full community inclusion with meaningful participation and membership
• have friendships and relationships
• have fulfilling lives

According to the MDCH, people who do not conform to the state's vision of success (people who live in group homes or are unable to earn an income in non-segregated settings, for example) are now being deprived of a new-found right, "the right to live in the world".

The state's vision dovetails nicely with the MDCH proposals to deal with the state's economic crisis: eliminate the bad old "legacy" programs such as day programs, sheltered workshops, group homes, and other programs in settings designed especially for people with the most severe and complex disabilities. A principle underlying the planning process for the future is that consumers need to get used to making do with less than adequate services, but rest assured: the state is more than willing to give them ample opportunity to participate in the fight over what to do with the remaining resources.

There are many well-defined rights for people with disabilities, including the right to treatment and services suitable to the person's condition and the right to participate in determining those services through the Person-Centered planning process. State and local mental health agencies have the obligation to assure that rights are protected and services available to meet the needs of a diverse population. There is nothing wrong or illegal with the existence of programs such as day programs, licensed group homes, and sheltered workshops that provide for the needs of many people with developmental disabilities. No one can deny a person participation in benefits that are generally available to everyone in a community, based solely on a person's disability, but neither can a person be forced to participate in a program or service they do not need or desire. And rights do not disappear in a bad economy.

"Living in the world" is not a right, but an often unpleasant reality that we all have to cope with. Everyone, unless one happens to be a hermit, lives in a community. "The" community, however, is an ill-defined abstract notion that is open to interpretation. Attempting to eliminate an infrastructure of services that many people with developmental disabilities depend on by choice and necessity does nothing to protect rights and very likely will not save money.

There is no getting around the seriousness of Michigan's economic crisis, but placing the burden of the crisis on vulnerable people and their families who have few resources with which to fight back is not a reasonable or humane approach.

WCHO Recipient Rights

Yet another meeting...

The Washtenaw Community Health Organization is our local Community Mental Health agency that serves people with developmental disabilities as well as people with mental illness and substance abuse problems. Anyone who suspects that a person receiving services through the WCHO has had his or her rights violated may file a complaint with the WCHO Office of Recipient Rights. It is especially important for employees of provider agencies to file complaints on behalf of the people they work with and it is a serious offense if they fail to do this.

Rights violations include various degrees of neglect and abuse, unnecessary invasion of privacy and confidentiality, unsafe living conditions, failing to provide services suitable to the person's needs, failing to treat the person and family with dignity and respect, to name just a few. The Policies and Procedures for the CMH Partnership of Southeast Michigan provides comprehensive information on the rights of people served in the mental health system.

The Recipient Rights Advisory Committee for the WCHO met on June 18, 2009 to review recent data on rights complaints. The data for the second quarter of this fiscal year (January through March, 2009) shows a large increase in the number of complaints received over the same quarter last year (118 versus 66 last year) as well as a large increase in the number of substantiated allegations (allegations that the Recipient Rights determined to be rights violations). This year there were 72 substantiated complaints as opposed to 30 last year during the same quarter.

There have been serious problems with one provider agency that has generated a number of complaints, but this is not enough to explain the increase. The most complaints have been from residential group homes for the developmentally disabled (19) and supported living placements (39). Supported living placements are unlicensed and serve up to 4 people with developmental disabilities with services provided in the home.

Only two of the incident reports came from families or guardians with 58 originating from the Office of Recipient Rights, 25 from recipients, and 24 from staff. It is especially important for families and guardians to be aware of complaint procedures and to use them when problems arise to ensure accountability and to correct problems within the system of care.

For more information on rights violations, go to the WCHO Recipient Rights Web site on how to file a complaint.

The Recipient Rights Advisory Committee meets quarterly with the next meeting in September 2009. There are two openings on the committee. If you are interested in joining the committee or have other questions about recipient rights, contact:

Shane Ray, Recipient Rights Supervisor
(734) 544-3000
rays@ewashtenaw.org