Merry Christmas!

Flash Mob sings Hallelujah Chorus in mall food court

Attack on parent-guardians, Texas style

According to an article in the Texas Tribune from September 15, 2010, the parents of an adult woman with Down Syndrome were removed as her guardians in a secret hearing by a Probate Court judge, after they became involved in a dispute with her group home over psychotropic medications for their daughter.

By all accounts, the Covingtons were good parents, caring for their daughter Ceci at home for more than 30 years. Ceci moved into a group home that her parents thought would give her good care, but that changed over time. Ceci began having headaches and tantrums. Her mother took her to doctors who diagnosed her with sinus problems and sleep apnea. Without the knowledge or permission of her parents, the group home began giving Ceci psychotropic drugs, assuming that her problems were psychiatric in nature.

When the parents disputed the need for psychiatric medication, the group home asked the Probate Court in a secret session to remove the parents as guardians for abuse. Secret or ex parte hearings are legal in Texas guardianship cases in emergencies to remove someone from an abusive situation. Not only did the parents lose custody of their daughter, but they were not allowed to see her for two months.

The Covingtons and other parents with similar experiences fought back through the media and the state legislature. In response, the presiding probate judge in Texas is quoted as saying, “What you have going on here is people who have done something wrong coming down to the Legislature, going to the newspaper, instead of trying their case in a court of law. In essence, they’re trying to intimidate judges.”

Looking into Guardianship abuses in Texas is like stepping into a hornet's nest of corruption and bureaucratic malfeasance against the elderly and disabled. According to the Examiner.com in Austin, Texas, state legislative hearings on guardianship included reports of abuses "in which family members were denied or removed from guardianships" and were subject to "bureaucratic bullying and institutional stonewalling".        

The Covingtons whose legal bills exceed $55,000, were scheduled to have a hearing about the removal of guardianship for their daughter in October, but it was postponed by the judge. According to the Texas Tribune article, "the judge who first removed Ceci from her parents recused himself from the case in July, following several families’ accusations against him at a legislative hearing in Austin."

In testimony before the Texas State Senate in May, 2010, Lou Ann Anderson had this to say about guardianship abuses:
 
"I am not before you here today to say that all guardianships are bad or abusive. Sometimes they are needed. However, whether initiated by public or private entities, hijacking the personal liberty and/or property of any Texas citizen for some self-enriching purpose is wrong. Motives may be direct financial gain through 'spending-down' the ward's assets, indirect gain by adding them to an institutional headcount eligible for taxpayer-funded subsidization or a combination of both. In any case, it's time for real dialogue to address naming all the true culprits, exposing the lack of recourse experienced by caring, responsible families, acknowledging the civil and property rights violations that occur and recognizing how these victims can end up a burden on honest, hard-working Texans as they are unnecessarily shifted into taxpayer-funded programs."

More information on guardianship problems in Texas can be found on the Website for GRADE, Guardianship Reform Advocates for the Disabled and Elderly.

MACMHB membership unanimously approves Choice Resolution

The Choice Resolution was adopted by the Executive Board of the Michigan Association of Community Mental Health Boards (MACMHB) on 8/6/2010. It was then voted on by the General Assembly of the MACMHB during the state conference on10/19/2010 and passed unanimously.
 
The Choice Resolution was a response by Community Mental Health Boards to family concerns about Michigan Department of Community Health policies to limit and eventually eliminate so-called legacy programs including day programs, sheltered workshops, licensed group homes, and other specialized services and placements in group settings.

The ARC Michigan and UCP Michigan opposed the resolution.

The resolution is a statement confirming the right of consumers of Mental Health services to choose from an array of services and supports based on their needs and preferences. The policy applies to members of the Association - all CMH Boards in Michigan.

Update on the homeless shelter option in Indiana

It seems there is more substance than I thought to the charge that Indiana has a policy  that recommends homeless shelters as an option for people with developmental disabilities. According to a report from TV Channel 6 in Indianapolis, a discharge plan form is given to people who are either not eligible for services or who choose not to receive services. The form lists a Homeless Initiative Program as a resource and refers to a list of homeless shelters.

My guess is that people who "choose not to receive services" do so not because they are particularly fussy, but because the services offered make no sense for their family member or are of such poor quality that nothing is better than something. As for people who are not eligible for services, we might be surprised at the severity of the problems people have who have been rejected by the system of care for people with developmental disabilities.

A spokesman for the Indiana Family and Social Services Administration acknowledges the existence of the discharge form, yet still denies that homeless shelters are offered as an option.

So the real scandal is all those things listed below, plus evidence that Indiana has a policy of offering homeless shelters to at least some families as options for their developmentally disabled family members.

Indiana homeless shelters: an option for severely disabled?

An AP article reports that parents of severely disabled children and adults in Indiana have been told to drop their family members off at homeless shelters, if they can no longer care for their children at home.

As it turns out, this is not an official state policy and there are no confirmed cases of parents actually following through with that suggestion. It appears it was more of a threat by frustrated employees of Indiana social service agencies to get parents to back off from their complaining about the unavailability of Medicaid waivers that could pay for services at home.

The real scandal is this:

• 20,000 people are on waiting lists with some people waiting 10 years for services.
• Governor Mitch Daniel ordered budget cuts that eliminated 2,000 Medicaid waiver slots since July.
• Foster children with disabilities have been moved to a less costly program that doesn't provide services for special needs and they had a food benefit taken away.

Almost everyone agrees that we should help the "truly needy", but doing it and paying for it are something else altogether.

Detroit: Administration on DD to hold "listening" session

On December 2nd, 2010, the federal Administration on Developmental Disabilities is holding a "listening session" in Detroit on "Envisioning the Future". Registration is still open and the agency is encouraging families to participate.

People who are picked to speak have three minutes (with an extra 2 minutes given to "self-advocates"). You can submit written testimony at the Website, whether or not you are chosen to speak. There will also be limited room for people who just want to listen. Speakers should arrive by 8:00 a.m. Testimony lasts from 9:30 a.m. until 3:30 p.m. followed by closing remarks with breaks interspersed throughout the day.

Here are some important links to information:

• How to give testimony.
• Details on the event in Detroit.
• Registration

What is the Administration on Developmental Disabilities?

The ADD is the U.S. Government organization responsible for implementation of the Developmental Disabilities Assistance and Bill of Rights Act of 2000, known as the DD Act. The ADD is part of the U.S. Department of Health and Human Services. The DD Act programs that are administered by ADD are the State Councils on Developmental Disabilities (the Michigan DD Council), Protection and Advocacy (Michigan Protection and Advocacy Services), University Centers for Excellence in Developmental Disabilities (DD Institute at Wayne State University), and Projects of National Significance.

Why is it important for the ADD to hear from you?

You and I are often represented by professional advocates who receive federal funding through the DD Act, but rarely do we have an opportunity to speak for ourselves directly to the agencies that fund the advocates. This is a chance for you to make your views known on behalf of your developmentally disabled family member.

Election day and developmental disabilities

There is a very good blog post by Ed Diegel at the Wayne County DD Advocates Website.

Among his thoughts on the election and what comes afterward is this:

"No one who talks about reducing state and national entitlements (which of course is a euphemism for programs like Medicaid) links their statements to Medicaid for persons with developmental disabilities—but the threat is there. It will be our responsibility to be sure that our elected and appointed officials understand the importance and morality of programs to support persons with Developmental Disabilities.

"So let’s vote wisely, congratulate the winners and continue to deliver the message."

He goes on to summarize the most recent threats to appropriate services for our DD family members with links to documents and other information to help you understand the issues.

Happy election day!

Medicaid dental services reinstated for adults in Michigan

Dental services for adults on Medicaid have been reinstated with passage of the budget bills for fiscal year 2011. Beginning October 1st, 2010, adults 21 and over may again receive dental services. For a comprehensive look at the services available, see the Dental Database for 2010.

Funding that made it possible to restore dental benefits is temporary, however, and will probably not be available next year. Even before the next fiscal year begins in October 2011, the next Governor could rescind these benefits through an executive order.

Some dental services require prior authorization from Medicaid before the service is provided. To assure that needed dental work gets done, adults on Medicaid should see a dentist as soon as possible to get authorization for Medicaid covered procedures. As long as authorization is obtained now, these services will be covered.

Free respite evenings in Washtenaw County

On the first Friday of every month from 6 p.m to 9 p.m., responsible volunteers provide parents of special needs children a break at St. Luke Lutheran Church in Ann Arbor.

The Special Needs Ministry of St. Luke Lutheran Church sponsors respite care with enjoyable activities, snacks, music, and fun in a safe environment for children with special needs. Siblings are welcome! The program is open to all ages.

Registration providing information about the child and family is required. An R.S.V.P. is required no later than the Tuesday before the Friday respite care evening. There are spaces for 25 children. A waiting list is maintained in case there are cancellations.

The next respite evenings will be on November 5th and December 3rd, 2010.

For more information contact:

Pam Kamrath at 734.474.0573 or pkmrath@comcast.net
St. Luke Lutheran Church
4205 Washtenaw Ave.
Ann Arbor

Former WISD teacher's aide receives probation for mistreatment of autistic student

A former teacher's aide for the Washtenaw Intermediate School District, Michael Beasley, was sentenced to probation for slapping a special education student in a WISD program for autistic students at Scarlett Middle School in Ann Arbor. He had already been convicted of another misdemeanor in a related case.

At first, when reports surfaced in 2008 that students had been mistreated by the aide, the WISD investigated and then transferred the aide to High Point School in Ann Arbor. Parents, dissatisfied with the WISD response to the charges, contacted the police who did their own investigation that led to criminal charges against the aide. The Director of Special Education for the WISD at the time resigned and other administrators were reassigned. The aide was fired based on a reinvestigation of the case by the WISD.

As reported by AnnArbor.com on September 8, 2010, the aide pleaded no contest to the charge of slapping a special education student in exchange for dropping a felony charge against him. He was later sentenced to one year of probation for a misdemeanor charge of assault.

According to AnnArbor.com, the mother of the autistic student said her son was hit so hard his face had a red mark for 15 minutes and that allegations from other parents showed a pattern of abuse. She said, "...My son could not communicate this abuse, and you cannot imagine how that made me feel.”

The aide's attorney said the sentence was redundant because Beasley is already on probation through the 15th District Court for a separate but related conviction.

For background information on this case see previous blog entries with links to reports from the Ann Arbor News.

Washtenaw County Special Olympics

This is a note from Anne Rogers, the Director of Special Olympics for Washtenaw and Livingston Counties:

Now that the school year is in full swing I wanted to send some dates for the upcoming year so you can plan for them.

We will have basketball practices starting December 6 at 6:00 at High Point School on Wagner in Ann Arbor next to the WISD. ALL abilities are welcome.

Our Spring Bowling Tournament is scheduled for April 29 at Bellmark.

Our Spring Games is scheduuled for May 17 at Saline High.

Our Polar Plunge is scheduled for February 19 at U of M golf club. We are looking for people to help plan this and to take the plunge.

I am always available to speak to groups that want to find out more about Special Olympics - just let me know.

Please forward to anyone that you think may be interested.

Anne Rogers,
Special Olympics Michigan
Director, Livingston and Washtenaw
phone: (734) 222-8283
fax: (734) 222-9895
Special Olympics Michigan Website
E-mail: mi27so@yahoo.com

Michigan group homes for severely disabled

A few weeks ago, I made a trip to Ottawa County in Western Michigan and visited what many consider a model program for people with the most severe developmental disabilities. I am always on the look-out for homes that care for people like my sons and these were outstanding by any measure.

Harbor House Ministries in Jenison, Michigan (just west of Grand Rapids in eastern Ottawa County), is a faith-based non-profit organization that grew out of a need for housing for people with severe disabilities. Parents and caregivers designed the residences (three buildings, each containing two 6-bed group homes) based on their conception of an ideal living situation for their loved-ones.

The homes are spacious, accessible for wheelchairs, and well-equipped for this population. For each six-bed unit, there is a spacious living and dining area. This is separated from the bedrooms by a firewall that would take two hours to burn through if there were ever a fire - it takes a mother to think of something like that. Each resident has his or her own large bedroom, furnished and decorated according to their personalities and wishes. One of the residents is so enamored of McDonald's that he would spend all his waking hours there if he could. His room is decorated in McDonald's red and yellow colors and contains all the images familiar to McDonald's fans.

Most of the residents at Harbor House have moved there from their family homes and they bring their own beds and familiar furnishings. Each bedroom has its own bathroom. Many families have provided a sleeper-sofa in case they need to spend the night if their family member needs them. Each room is temperature controlled and the floor is heated for the residents who crawl and spend time on the floor. Each 6-bed unit has a large fully-equipped shower and bathroom.

I have been in group homes that have a television blaring full-time (more often for the staff than for the residents), but at Harbor House, there were no TV's except in a few residents' rooms. They do show DVD's for the residents for entertainment, but there is a lot more at Harbor House to do than stare at a TV all day.

A large activity center was built for a day program and other recreational and therapeutic activities. The building includes a therapy pool heated to 92 degrees that 3 or 4 residents can use at a time. It is used every day. A kitchen for preparing evening meals for residents is also part of the spacious activity center. Residents participate in community activities according to their individual needs and abilities.

Peggy Dreisenga, the Community Relations Director for Harbor House, says that they are most proud of the care they give residents. The staff-to-resident ratio is 1:2. A nurse is on staff days and evenings and always on-call for emergencies. They hire staff based on their compassion, integrity, energy, and joy and encourage close relationships with families. " We can train the specific tasks of care, but we can't teach a person to be caring...It is our goal to provide the opportunity for a great life, not just a great place to live," says Peggy.

There are many other factors that make this program a success:

• The organization operates debt-free so that all the funds coming in are spent on residents and maintaining the facilities.
• They have strong community support from family groups, local churches, their local Community Mental Health agency, and other community organizations.
• Harbor House recognizes that families of adults with severe developmental disabilities are the best advocates for their adult family members. Families meet regularly and help with various tasks in the homes.
• It costs less to place a person at Harbor House than it does in other group homes in Ottawa County.
• Staff makes on average a dollar more per hour than staff in other group homes and there are other incentives to keep good people on staff such as flexible hours, especially important for college students and parents.

Harbor House is not expanding its facilities, but the organization is willing to help others who are interested in providing excellent care for their severely disabled family members.

For more information, contact:

Peggy Driesenga, Community Relations Director
616-797-0810
pdriesenga@harborhouseministries.org

Harbor House Ministries
919 44th Street Jenison, Michigan 49428
(616) 797-9920
(616) 797-9921 Fax

The Website for Harbor House Ministries provides more information and pictures of their facilities.

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.

***********************************
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.

****************************************

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.

Michigan's Medicaid budget approved by Legislature

A Detroit Free Press article reports that the Michigan Medicaid budget for the 2011 fiscal year has finally passed both houses of the Legislature and awaits the Governor's signature. With $650 million of federal stimulus money, the Department of Community Health has avoided a threatened $50 million cut in mental health services and has restored dental, podiatry, and vision care for all Medicaid recipients. A 4% cut in reimbursement to physicians and hospitals has also been avoided.

In usual fashion, the Legislature has ignored the problem of future deficits starting in 2012 when the stimulus funds are no longer available. Next year, there will be a $500 million gap in the budget, but who cares? It's an election year and a large number of legislators will be gone or will have shifted to another house because of term limits. Tax increases for next year have been suggested by Republican Senator Roger Kahn from Saginaw Township, who predicts that the next Legislature will "enact a combination of spending cuts, reforms and tax increases to avoid a deficit."

Bridge cards accepted at local farmers' markets

Low-income people, including many people with disabilities, are eligible for SNAP (Supplemental Nutrition and Assistance Program) Bridge cards to purchase food. The Double Up Food Bucks program is sponsored by the Fair Food Network and doubles the value of Bridge card purchases of fresh fruits and vegetables at local farmers' markets.

The Bridge card holder purchases up to $20 worth of tokens at a participating farmers' market for $10 off the Bridge card. The tokens are then used to purchase fresh fruits and vegetables. Local markets participating in the program include:

• Ann Arbor Farmers' Market at 315 Detroit St.
• Downtown Ypsilanti Farmers' Market on Ferris St. between Hamilton and Adams,
• Westside Farmers' Market at 2501 Jackson Ave., and
• Ypsilanti Depot Town Farmers' Market at 100 Market Pl.

Double Up Food Bucks helps farmers by increasing sales of fresh fruits and vegetables in a sustainable, dependable way. It allows eligible residents to purchase fresh fruits and vegetables that might ordinarily be out of their price range.

There are also many other locations in the Detroit area that participate in the program. Here is a list of farmers' markets throughout Michigan that accept Bridge cards.

Michigan advocates throw hissy fit over Choice Resolution

[Click here for a link to a copy of the letter to the MDCH from Michigan advocacy groups.]

The Choice Resolution, supported by many family groups and individuals who work with people with disabilities, is intended to preserve specialized services and residential programs as an option for people with developmental and other disabilities. Even before the resolution had final approval, the ARC Michigan, UCP Michigan, the Michigan Disability Rights Coalition, and Michigan Protection and Advocacy Services wrote a letter to the Michigan Department of Community Health (MDCH) to avert the possibility that too much choice for people with developmental disabilities might interfere with the advocates' agenda. The letter, addressed to Janet Olszewski, the Director of MDCH, and dated July 15, 2010, expressed alarm over "increased segregation and congregation" of people with developmental disabilities. The advocates demanded that MDCH administrators soldier-on in their efforts to eliminate larger licensed community group homes housing more than six people. They did this apparently without any regard for the wishes, needs, or choice of the the people who actually live in these homes.

We know that the ultimate goal of the MDCH is to eliminate licensed group homes, sheltered workshops, day programs, and other specialized disability-only programs. The state must be thrilled to have influential advocacy groups supporting their plans, but families may question whether these groups represent the interests of their loved-ones when they are so dismissive of anyone who does not agree with them or share their ideology.

The letter, signed by Dohn Hoyle of the ARC Michigan, Glen Ashley of UCP Michigan, Norm DeLisle of MDRC, and Elmer Cerano from MPAS, goes to some lengths to portray the "decision makers" who don't agree with these advocates as ignoramuses: Surely, they've never read the Oklahoma Quality Tracking Project that followed the Hissom Lawsuit (1990-1995) and showed that "any home with more than two people showed less progress in Self-Care Abilities". They probably don't even know that Val Bradley, the President of the Human Services Research Institute, said that "...the bigger the residence, the less choice." Nor have they read the speech by Sam Bagenstos from the US Department of Justice about integration. Some of the decision makers may not even know that there is an Article 19 of the United Nations "Convention on the Rights of Persons with Disabilities". How dare they pretend to know anything about what is good for people with disabilities, other than what these advocates tell them.

Nevertheless, all the studies in the world and pronouncements by supporters of full inclusion for all do not change the obligation of the Michigan community mental health system to provide appropriate services to people with developmental disabilities, to allow full participation by the person served or their legal representative in making decisions, and to implement person-centered plans based on the needs, preferences, and choices of the disabled person.

The advocates, displaying either their own ignorance of the law or a willingness to distort the facts to further their goals, misrepresent the Americans with Disabilities Act and the U.S. Supreme Court's Olmstead decision to support their demands:

The letter says, "Title II of the ADA calls for providing public services in the most integrated settings", but the ADA regulations on integration say, "A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities." [28 C.F.R. §35.130(d)]. That little phrase, "appropriate to the needs of qualified individuals with disabilities", that was so carefully omitted, changes everything. The needs of the individual define the extent to which the person will be integrated into the larger community.

ADA regulations recognize a dual mandate - the right not to be discriminated against and the right to reject services that the individual does not accept:

• 42 U.S.C. § 12132 : "Subject to the provisions of this subchapter, no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the servicees, programs, or activities of a public entity, or be subjected to discrimination by any such entity."
• [28 C.F.R. §35.130(e)(1)] "Nothing in this part shall be construed to require an individual with a disability to accept an accommodation, aid, service, opportunity, or benefit provided under the ADA or this part which such individual chooses not to accept."

The Supreme Court's Olmstead Decision which addresses the question of whether unwanted institutionalization in a state-run facility is discrimination under the ADA, never mentions community-based congregate facilities. The statement in the letter that, "Olmstead certainly did not say it was permissible to build and house individuals in new segregated settings" is technically true but totally misleading.

The Olmstead decision says that transfer to a community placement from an institution is required and appropriate when –

• “(a) the State’s treatment professionals have determined that community placement is appropriate;
• (b) the transfer from institutional care to a less restrictive setting is not opposed by the affected individual; and
• (c) the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.” 119 S. Ct. at 2181.
  

Olmstead supports choice. It does not mandate the closure of institutions: “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. at 2187. The decision does not mandate the closure of community-based programs or residential placements of any size nor does it designate these programs as institutional in nature and therefore discriminatory.

The letter discusses experiences from the closure of Mount Pleasant Center, an Intermediate Care Facility for the Mentally Retarded (ICF/MR). Bill Allen and Angela Martin, who were responsible for discharging people from Mount Pleasant and monitoring them afterwards, came to the conclusion that "smaller is better and smallest is best", the letter says. "They maintain that was true for every single person who moved back to the community, some 120 persons. Their extensive experience leads them to believe that this is true for anyone with a developmental disability who would be served by the public mental health system."

The families of the people at Mount Pleasant Center are in a better position to respond to that statement than I am. I do know that the effects of the closure on former residents were mixed, with many families happy to have their family member living closer to them, but missing some of the services readily available at Mount Pleasant that are not available to them in community settings. Many of the families opposed closure of the facility and testified at hearings to that affect before the Michigan House of Representatives in March 2009. Some of the former residents of Mount Pleasant Center were not placed in the community, but were instead transferred to another ICF/MR at Caro Center, a state psychiatric hospital. On July 28, 2010, in a meeting with a state senator from Ottawa County and family groups, Michael Head from the MDCH confirmed that at least 10 people who were moved out of Mount Pleasant Center have died. Out of respect for former residents of Mount Pleasant Center and their families, the advocates should not be so quick to accept everything the state or its representatives tell them just because it bolsters their case for full inclusion for everyone.

All the groups signing the letter are recipients of federal funds for people with disabilities and should be held to higher standards for truth and accuracy. They are entitled to their opinions on inclusion, but not to misinterpretations and distortions of federal mandates.

Update on the Choice Resolution

Last May, the Michigan Association of Community Mental Health Boards (MACMHB) Executive Board considered and then tabled for further consideration the Choice Resolution, a statement confirming the right of consumers of Mental Health services to choose from an array of services and supports based on their needs and preferences. Over the summer, the statement was revised and approved by the MACMHB Executive Board. It recognizes differences in philosophy and service needs in this diverse population of mental health consumers. The policy applies to members of the Association - all CMH Boards in Michigan.

The Choice Resolution was a response to issues raised in recent months regarding services for people with developmental disabilities. Administrators from the Michigan Department of Community Health had stated their intent to eventually eliminate specialized programs for people with Developmental Disabilities that are provided in group settings such as day programs, sheltered workshops, and group homes. They claimed they only wanted the best for our family members, but they also recognized that with the state in financial distress, this was an opportune time to begin slashing funding for programs they claimed were discriminatory and isolating. In addition, a draft policy from the Standards Group of the MACMHB, called the Vision for all People with Developmental Disabilities, was being distributed and talked about at meetings between the state and Community Mental Health agencies as if it were already approved policy .

The draft policy statement was especially disturbing because it explicitly stated that the "Vision" should apply to everyone with a developmental disability, regardless of the severity of the person's disabilities, cognitive abilities, or medical or other issues affecting the individual. It was also incredibly silly in its attempt to apply a detailed list of acceptable and unacceptable activities for all people with DD (joining Neighborhood watch is OK, but don't do it with a bunch of other people who are developmentally disabled; a little bit of Special Olympics may be OK, but too much is not acceptable; etc.). Behind the Vision statement is an ideology that some advocacy groups support, but it lacks a basis in law and policy regulating services to people with developmental disabilities.

At the May MACMHB Executive Board meeting there was some backtracking on the Standard's Group "Vision" with promises to take out value judgments on placements and programs that some people need and want in their communities. The Executive Board finally came up with this:

RESOLUTION REGARDING CHOICE
Adopted by the MACMHB Executive Board August 6, 2010

The Michigan Association of Community Mental Health Boards (MACMHB), Prepaid Inpatient Health Plans (PIHPs), and Community Mental Health Services Programs (CMHSPs) recognize there are differences in service preference among the individuals they serve and shall honor Choice for all consumers regardless of the individual’s service delivery site philosophy.

MACMHB, PIHPs, and CMHSPs shall support taking all necessary steps to ensure that individuals with mental Illness, developmental disabilities, or substance use disorders and children with serious emotional disturbances have the opportunity to live in the least restrictive setting that is appropriate to the needs of the individual and is the individual’s personal Choice.

MACMHB, PIHPs AND CMHSPs shall support a person centered planning process that honors the individual’s true Choice.

Our vision embraces programs or services that enable the persons that we serve to be full and participating members in their community.

This can include the continuation of existing services, the improvement of existing services, and the development of new opportunities, all driven by ongoing and informed consumer Choice.

This may do little to squelch the zealots who want to eliminate programs that don't measure up to their views on what our family members should want and need, but it is a beginning. The interest and participation of families and consumers from all over the state were a hopeful sign that the mental health system will respect the differing philosophy's of consumers and continue to take that into account in the programs and services they offer.

Health Care Reform Benefits

Family Voices, an organization devoted to family-centered care for all children and youth with special health care needs, including children with disabilities, has written a statement on the Patient Protection and Affordable Care Act (federal health care reform legislation) summarizing benefits. They give some useful examples of situations in which the benefits will be of particular interest to parents of children with disabilities.

A document on the immediate benefits available is found here. Major portions of the act do not go into effect until 2014, but in the mean time, there are many benefits that are already in place or will be soon:

• Elimination of lifetime benefits caps (beginning September 23, 2010)
• Prohibition against rescinding coverage when someone gets sick (beginning September 23, 2010)
• Prohibition against denying children coverage for pre-existing conditions (July 1, 2010)
• Requirement that young adults be permitted to stay on their parents' insurance policies until age 26 (beginning September 23, 2010)

One section of the law of importance to states is a provision that allows states new options to cover parents and childless adults up to 133 percent of the Federal Poverty Level (FPL) and receive current law Federal Medical Assistance Percentage (FMAP). Effective April 1, 2010, this expansion of Medicaid could help states like Michigan to bring in more money for mental health specialty services. This would be felt especially in the areas of services for mental illness and substance abuse (the vast majority of people with developmental disabilities already qualify for Medicaid). People with these problems who do not now qualify for Medicaid because of their status as single adults or who are just over the poverty line, could qualify in the future and also receive services that are dependent on Medicaid eligibility.

In the long run, this would probably save money for the mental health system by bringing people in early for services and avoiding expensive hospitalizations. Every $1 the state spends on Medicaid will bring in about $3 of federal matching funds and could keep the system from collapsing under the burden of huge state deficits. Not only does money spent on health care expand jobs and improve the economy, but it relieves the pressure on the mental health system and frees up money for other much-needed services.

Check out these important resources to see if you or your family member can benefit from health care reform now.

We're not in Kansas anymore!

We have returned from a 3,000 mile road trip to Colorado and back. Before the trip, I had many second and third thoughts about leaving the boys in their group home, the grandparents in their advanced state of age, and the dog and two cats at the mercy of relatives who agreed to live in our house for a week and watch over the whole mess.

It all turned out OK. The dog Lucy was especially happy to have two young kids at her beck and call who had the energy to take her for walks every day.

Waiting Lists for developmentally disabled

Click here to see a You Tube video called "Disabilities Don't Wait" from Noewait ( National Organization to End the Waitlists). In Michigan we don't have Waiting Lists. We have Priority Lists. Does that make you feel better?

WCHO Town Hall Meeting: June 29th, 2010

Join the Washtenaw Community Health Organization (WCHO) and Community Supports and Treatment Services (CSTS) in a fun and informative evening.

Share your thoughts and ideas on the Community Mental Health System in Washtenaw County and hear what others have to say.

2010 Town Hall Meeting
Tuesday, June 29, 2010
5:00 pm – 8:00 pm
Washtenaw County Human Services
555 Towner, Ypsilanti MI 48197
In the Large Conference Room

Spaghetti Dinner provided by Full Circle Drop In Center and Dessert provided by Fresh Start Clubhouse

All are Welcome! No reservations necessary!

For more information, contact Customer Service at (734) 544-3050 or (877) 779-9707

Large caseloads for Michigan group home monitors

According to the Summer 2010 issue of Exchange, a publication of Michigan Protection and Advocacy Services, there are fewer employees of the state Bureau of Child and Adult Licensing monitoring group homes. Adult Foster Care (AFC) group homes provide housing and services to people with developmental disabilities, mental illness and to people who are elderly.

In the article "Concerns Regarding Bureau of Child and Adult Licensing", Brian Sabourin provides information on cutbacks to licensing that directly affect monitoring of group homes intended to assure safety and appropriate care of residents:

"In 2002, before massive state employee retirements, there were 80 Adult Foster Care (AFC) licensing consultants with an average caseload of 55 facilities per consultant. In 2008, there were only 49 licensing consultants experiencing double the aforementioned caseload. This comprises the division's ability to regulate the almost 4,800 adult foster care homes."

In 2009, with this staff of 49 people, licensing handled over 2,000 complaint investigations, over 2,000 licensing renewals, and 374 inspections for new licenses. This was in addition to monitoring critical components of care such as staff training, qualification, and background checks, administrative capability, resident care, and resident rights.

It is hard to believe that such large caseloads are not affecting resident care or that residents are not being harmed as a result.

(The Summer 2010 issue of Exchange is not yet available on the MPAS Web site under publications, but should be soon.)

Florida parents plan communities for developmentally disabled

In Florida, there are more than 18,000 developmentally disabled people waiting for services and residential placements. That translates to a 10 -15 year wait for most people. Parents have taken this dilemma into their own hands and have begun developing planned communities for their family members. Noah's Ark of Central Florida has plans to create communities modeled on retirement communities that are home to seniors all over the country.

The communities will include families and caregivers of their primary residents, people with developmental disabilities. They will be a blend of apartments, villas, group homes, and single-family homes with spaces for socializing, recreation, and vocational and educational activities. One village, Noah's Nest, has three homes near downtown Lakeland, Florida.

One obstacle the parents faced was a state law that prevented group homes from being established within 1,000 feet of each other, so they lobbied the Florida legislature to change the law. According to an article in the Miami Herald, April 27, 2010, they were opposed by advocates who claimed that the planned communities are institutions that segregate people from the rest of society:

"In our society, we call places like this institutions," said Kingsley Ross, who represents Sunrise community, a nonprofit organization catering to the developmentally disabled and the elderly. "People with developmental disabilities have to be in contact with good models of behavior. If you surround them with people that don't have normal types of behavior, what we are going to see is more people with bad behavior."

[Kingsley Ross, who worries so much about other people's behavior, is a registered lobbyist for the Autism Society of Florida and Sunrise Community, Inc., a non-profit provider of group homes and other services for people with disabilities and seniors.]

The family members, however, have a different view . Many of their loved-ones have already experienced "community living" and have found it to be isolating, not fulfilling, and even dangerous. Families are not trying to compete with options that work well for many people with disabilities, but to offer more options and choice based on the needs and preferences of their loved ones.

The law to rescind the restriction on group homes was passed and signed by Governor Crist on June 3rd, 2010. Well done, Florida parents!

[See also: Michigan group homes for severely disabled]

Goal for all special ed students: college and a career

According to an article on the Web site Disability Scoop from April 22, 2010, U.S. Secretary of Education Arne Duncan has insanely high goals for all special education students regardless of ability level: they should all leave school ready for college and a career.

In a speech to the annual convention of the Council for Exceptional Children in Nashville, he called on special educators "to take personal responsibility for the success of their students after graduation". The problem, as he sees it, is a lack of high expectations for these students. Those pesky disabilities that prevent my sweet baby boy (OK, he's twenty-five, but I'm his mother) from walking, talking, feeding himself, and 500 other things that most people learn to do by the time they are three, are definitely not the problem. The magic needed to transform high expectations into unattainable goals will be the upcoming reauthorization and amendment of the No Child Left Behind Act (NCLB).

There is another possibility, though. Maybe Arne Duncan is just confused about the meaning of the word "all"? After doing a little internet research on the NCLB goal of 100% proficiency for all students in reading and math by the year 2014, I discovered that schools only have to report test scores for 95% of their students. So five out of a hundred students, mine included, are outside the realm of "all".

It sounds dishonest to me to say "all" when you mean 95% of "all". But how could honesty, truth, and accuracy possibly have anything to do with education?

Diane Ravitch on school reform

In recent years, school reform has focused on testing basic skills in reading and math and linking accountability to student test scores with the assumption that this improves education for all students. Reforms have also encouraged school choice by allowing charter schools to compete with regular public schools, while relieving charter schools of having to abide by the same regulations and mandates for serving all students that regular public schools must follow.

Diane Ravitch, in her new book "The Death and Life of the Great American School System: How Testing and Choice Are Undermining Education" (New York: Basic Books, 2010) warns of the perils of continuing on the path that was set by No Child Left Behind (NCLB), an education reform law signed by George W. Bush in 2002. The law is due to be reauthorized and amended by Congress this year.

Dianne Ravitch is a former assistant secretary of education under George (the 1st) H. W. Bush, a former cheerleader of charter schools, and former supporter of George (the 2nd) W. Bush's NCLB. She is a historian who has written extensively about school reform movements and has changed her mind about the effects of school reform efforts because the facts don't bear out the claims that they are working.

Ravitch is especially concerned about the punitive nature of NCLB that uses questionable testing of reading and math proficiency to punish or reward teachers, principals, and schools based on the test scores of students. By law, in 2014, all students (actually only 95% of student's test scores will be counted) must be proficient in reading and math or the schools will face dire consequences. The emphasis is on closing public schools that don't perform and encouraging charter schools to replace them or have them run by entities other than local school districts. Closing public schools may sometimes be necessary, but overall, public schools do better than charter schools at educating students when factors such as the difference in how many disadvantaged and disabled children are being served are taken into account. Data-driven reforms do not reflect changes in curriculum that have reduced the time spent on teaching students history, literature, science, and the arts and increased time spent on bolstering skills related to filling in multiple choice questions on standardized tests.

The problem with No Child Left Behind, says Diane Ravitch, is that it "...was bereft of any educational ideas. It was a technocratic approach to school reform that measured 'success' only in relation to standardized test scores in two skill-based subjects [reading and math], with the expectation that this limited training would strengthen our nation's economic competitiveness with other nations. This was misguided, since the nations with the most successful school systems do not impose such a narrow focus on their schools."

A major flaw of NCLB is that states were allowed to come up with their own tests on which their success would be judged. Not surprisingly, the states cheated. If they needed to show more improvement to escape penalties, they lowered the score needed to pass the proficiency tests. If there were too many high school dropouts in New York City, for instance, the city began calling students who left school without a diploma "discharges" and they were not counted in the drop-out rate. In some instances, schools that showed astounding progress in terms of higher test scores, showed little improvement when measured against results on national standardized tests such as the National Assessment of Educational Progress or the SATs.

Charter schools were originally proposed in the 1980's to serve students who were consistently failing in our public schools to help them succeed. These schools were seen as the laboratory for innovation to foster new ideas to help public schools, but they have become the chief competitor with public schools. Although their quality can range from excellent to dismal, they generally are allowed to select students who raise their test scores and to dismiss or discourage students from enrolling who might make them look bad, including students with disabilities.

Promoting charter schools and other unproven reforms is a pet project of well-funded foundations that allow extremely wealthy people to shelter their money from taxes and then use it to promote their own version of school reform. Their version is often not supported by the public and there is little scrutiny of whether their ideas actually work for the benefit of schools and students, but the amount of money flowing from the foundations overwhelms that coming from other sources.

Ravitch does not believe that the emphasis on managing schools as if they were businesses is helpful: "American education has a long history of infatuation with fads and ill-considered ideas. the current obsession with making our schools work like a business may be the worst of them, for it threatens to destroy public education. Who will stand up to the tycoons and politicians and tell them so?"

The author includes her well-considered opinion of what does work for improving schools, but there are no panaceas and nothing that does not take time and perseverance. Whether you agree with her or not, the ideas in Ravitch's book need to be taken into account as the issue of school reform is once again getting national attention.

Here is a link to a C-Span interview with Diane Ravitch about her book.

The ARC Michigan and UCP oppose Choice Resolution

Michael Vizena, the Executive Director of the Michigan Association of Community Mental Health Boards, contacted a number of advocacy groups before the May 17, 2010 meeting of the Executive Board to ask their opinion on the Choice Resolution. The Resolution affirms the right of community mental health consumers to choose services and settings from a full array of options based on their individual needs and preferences.

He received three responses before the meeting: Michigan Protection and Advocacy Services said in a brief e-mail, "This is an excellent policy statement." The ARC Michigan and United Cerebral Palsy of Michigan were adamantly opposed to the resolution.

Dohn Hoyle, Executive Director of the ARC Michigan, says "The statewide advocacy community, on behalf of persons with developmental disabilities, is united in seeking improved integrated models for supporting our fellow citizens with disabilities. This does not include old out-dated models and methodologies which congregate and segregate them."

He goes on to say, "At a time when strong mutual advocacy is called for, it is disappointing to see the Board Association staking out an apologist position, sanctioning almost anything a Board or provider would suggest, if they could find any people to agree with it. Such a document would be very divisive."

The Executive Director of UCP, Linda Potter, says,"I'm surprised the Boards Association would think of adopting such a statement, which is completely opposite to the spirit and intent of the Application for Renewal and Recommitment (ARR). The ARR gives us a vision of where we want to be. Why then adopt a discussion of 'choice' that acknowledges services that would be a turn backwards?"

Considering the stance of Michigan Protection and Advocacy on the choice issue and the many families that wrote and called in support of the Choice Resolution, Dohn Hoyle seems to have miscalculated the degree of unity in the advocacy community on this issue. The advocacy community has never been monolithic, and some of the fanatical, unbending positions that the ARC Michigan has taken over the years has done little to prevent unnecessary polarization. Neither Dohn Hoyle nor Linda Potter seem to have much faith that people with developmental disabilities and their families really do know better, even better than advocacy organizations, what they need and want.