New Life

By on August 16th, 2011

Columns
Tom Watkins

Tom Watkins

New Life

August 16, 2011

There was a time in Michigan when if you were born with a severe disability you were likely to be institutionalized for the rest of your life. Doctors told parents that institutional care was the best option and discouraged family involvement because it would “confuse” the child and hinder treatment.

It was a life sentence: your freedom to live a productive life with your family and friends, attend a neighborhood school and make decisions for yourself, with trusted assistance when needed, were just some of the rights that were stripped from you.

It was a costly policy from both a human development and tax expenditure perspective. The cost of “care” in a state institution far outstripped the life of opportunities that came from being able to participate fully in one’s community.

Ray Schuholz knows the human cost all too well. “I lost three and a half years of my life in a state institution,” the former Plymouth Center resident recalls with tears welling in his eyes.

Today, however, his smile illuminates the room as he reflects on his new “freedom” after moving from a state institution to a group home to now living in his own home and working as a peer mentor advocate (a person with a disability who is employed to perform training, advocacy and help others navigate the system). “Joy, freedom, I am living my life!” he exclaims.

Today, because of the work of parents, advocates, enlightened governors, investigative journalists and supportive legislators, Michigan is one of only a handful of states — and by far the largest — to have closed all state institutions for persons with developmental disabilities.

There were some 12,000 persons with developmental disabilities in 13 state institutions back in the mid to late 1970s. The last facility, in Mt. Pleasant, was closed in 2010.

This policy decision is morally right and fiscally sound. The lives of individuals with developmental disabilities and their families have been enriched and our communities strengthened, all at less cost to taxpayers — a true win-win for all.

And the celebration is not just in the closure of these large, inhumane “warehouses.” We should be proud as a state that Michigan, to a far greater extent than any other state or nation, has worked to integrate persons with disabilities into their communities.

While advocates celebrate the closure of state institutions, however, they also point out that we still have a long way to go to fully integrate persons with disabilities and enable them to have the type of life to which everyone in the community can aspire. Dohn Hoyle, executive director of the statewide parent/advocacy group Michigan-ARC and someone who has spent a lifetime advocating for persons with disabilities, can fire off the statistics of how many people are still trapped in “community institutions.”

“The ARC believes there is much, much left to do to provide full rights to people with disabilities in Michigan and across America,” Hoyle said. “Today, while some are patting themselves on the back, thousands of people with disabilities are inappropriately ‘housed’ in nursing homes, group homes and in large congregate living facilities.”

Michigan’s system of support for persons with disabilities has evolved, weaving together coalitions built across political lines and engaging parents, the news media, the legal community and persons with disabilities to “educate” and, when necessary, cajole multiple governors and legislative bodies into action.

Vigilance
Although all the institutions have been closed, there is a continued need for vigilance to ensure Michigan does not slip backwards.

Simply living in the community in a provider-centered and institution-like arrangement, instead of a person-centered and home-like environment, is contrary to the freedoms and rights all Americans expect. As a state, we need to be cautious we don’t simply re-establish the former institutions in a new community form.

Poet and philosopher George Santayana is credited with saying, “Those who cannot remember the past are condemned to repeat it.” During these tough economic times, when governmental bodies are seeking ways to scale back, there are whispers — and fears — that “money can be saved” by returning persons with disabilities to larger congregate facilities. This would be morally wrong and fiscally unsound.

One way that Michigan has taken deinstitutionalization and community integration to a higher level is through a concept of “self-determination.” The Michigan Department of Community Health defines self-determination as “a set of concepts and values which underscore a core belief that people which require support from the public aging or behavioral health system as a result of a disability should have access to meaningful choices, and control over their lives.”

Tom Nerney, president of the Center for Self-Determination, compliments Michigan on being a leader in embracing the core concepts of self-determination. Nerney sums up self-determination this way, “All people should have freedom, a home, deep human relationships, meaningful work and control over their income and supports.”

Jim Haveman, director of the Department of Community Health under Governor John Engler, was relentless in his thrust to a community-based system of care. I caught up with Haveman recently, and he continues to advocate for persons with disabilities. “Strong parent groups, together with the department of community health and other organizations and agencies, need to work hard to continue the cadence toward self determination and independent living,” he said.

The transition from institutional care to community care in Michigan began with Governor William Milliken, “Mr. Human Decency.” It has been carried forward and strengthened by each successive governor, Republican and Democratic alike.

It was Gov. Milliken, with his appointment of C. Patrick Babcock as the director of the then state mental health system, that set Michigan on a course to be a leader in reintegrating persons with disabilities back into their communities. Babcock, who continued on with Governor James Blanchard, knew how to harness the anger of parents and work with legislative allies to develop legislation and, more importantly, to secure appropriations necessary to turn policy into positive action.

Clearly, the path “from out of sight, out of mind” state institutional care to integrated community living is not without its challenges.

Elmer Cerano, executive director of Michigan Protection and Advocacy Service, echoes many of the sentiments of Hoyle that Michigan can take pride in the closure of its institutions yet still has much work to do.

In fact, Cerano fears history is repeating itself. More and more, he says, he’s hearing the same rationale that was used to maintain large state institutions back in the 1970s and ’80s: “They can be with their friends,” “They would be safer,” “We can build an activity center right on the grounds.” “There is a movement,” he says, of parents who want to “build segregated villages for their adult children with intellectual disabilities.”

Cerano strongly opposes such a move. “We must not place limits on the human potential of people with disabilities…Remember, it was professionals and politicians only a short generation ago who gave a life sentence, in a state institution, to people born with a disability.” He pleads, “We must not allow the 21st century [professionals and politicians] to hold back the full potential of people with disabilities.”

Andre Robinson, an outspoken advocate, peer mentor and consumer member of the Michigan Developmental Disabilities Council, says, “I have been blessed to taste the dignity of living my life my way; I beg those with power to make decisions to help us keep our freedom.”

Jim Dehem, president and CEO of Community Living Services, which provides administrative and support coordination for approximately 4,000 persons with developmental disabilities and senior citizens in the metropolitan Detroit area, rejoices in the institutions being closed. He, his staff and the CLS network of providers also take great pride in assisting people to live in their own homes, with whom they choose or with their families, and putting behind them the past system of dependency upon group homes and nursing homes.

“At CLS we are assisting people with disabilities to have authority over their own lives,” says Dehem. “As an organization, we have converted to a model of support rather than a system of professionals, programs and facilities — people should not have to give up their freedom and life because they happen to need support as a result of a disability.” He adds, “We all need the support of others in our lives.”

Speak Out
Edmund Burke, author, political theorist and philosopher, said, “all it takes for evil to triumph is the silence of good men.” Over the years, advocates, parents, friends, the media and concerned elected officials refused to remain silent.

Gov. Milliken is a mentor of sorts to our current “reinvention governor,” Rick Snyder. Perhaps Gov. Snyder will complete the job begun by Milliken by helping fulfill the dreams of Andre Robinson and Ray Schuholz and all the people they advocate.

Today, we see the success of that once new approach in the smiles of people who had been institutionalized and those who never saw the inside of a state institution, who are now living their lives, their way, in their communities. We have witnessed what can happen when good people stand up and speak out.

Michigan has come a long way from the days of banishing people with disabilities to large state institutions. Yet we should never rest on our laurels, thinking the job is done because one evil has been eliminated.

Hoyle sums it up, “Until all people with disabilities have the rights and opportunities preordained to every citizen of this great country, there is work that remains to be done.”

Tom Watkins, EducationNews.org’s 2010 Upton Sinclair Award winner, is a business and educational consultant in the U.S. and China. He served as director of the Michigan Department of Mental Health in Gov. Blanchard’s administration and state school superintendent during the Engler and Granholm administrations.

Tom Watkins

Tom Watkins has an eclectic career in both the public and private sectors. He served the citizens of Michigan as state superintendent of schools and director of the department of mental health. He has held leadership positions in higher education, business and behavioral health. Watkins has a interest and passion in all things China and has written hundreds of article on the value of this most important bilateral relationship in the world today.

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Francis Collier
Guest
Francis Collier

Smack— Watkins, you knocked this essay out of the park! There is great fear from those of us who worked to close the state insititutions that this administration is going to roll back the gains– all the way back to the Romney era! We need a return to the days when people like you and Babcock ran these departments with both your heart and your minds. Today, it seems that we have simply a bean counter mentality and an accountant view of the world. I hope parents, advocates, legislators and even the Govenor who has flashes of human decency realize… Read more »

Elaine
Guest
Elaine

An excellant reminder to continue to forge ahead and not slide back to the old ways of doing things. The Michigan Department of Community Health has an opportunity to redesign the Long Term Care System to an INTEGRATED and INNOVATIVE care model that is person centered, based on the principles of self-determination and that supports people in their homes and communities.

Elaine
Guest
Elaine

quite frankly I think a practical business approach to our public policy and practice is needed, my earlier comments touch upon a model that is not only preferred by the individuals it supports but is also more cost efficient and produces better outcomes. How do we get this information to the people in the state department who make the decisions about what our long term care system will look like over the next couple years?

Tim Abrams
Guest
Tim Abrams

We need to keep moving forward as a state. 6 bed group homes were a welcome relief from large state “hospitals”— but clearly should not be the last stop for true freedom and independence for people.

Frank
Guest
Frank

as a tax payer, I agree with our governors approach to the bottom line and expecting real outcomes for each dollar spent. There is not an endless pot of money if there is a model out there that works better then the one we have now, that people prefer and that also cost shifts or saves the state money then I’d vote for it. the writer above touched on one we need more ideas like that

Marge
Guest
Marge

My great aunt born in the early 1920’s had down syndrome, but she also had mother who risked going to jail in order to keep her daughter out of the institution. Auntie Betty was considered a special gift from God. She never did in her 68 years see the inside of an institution. No one should ever have too. I find it amazing that in 2011 we are still having this discussion and that politicians continue to believe that it’s “okay” to continue to take supports of any kind from people who are still fighting for dignity, respect and independence… Read more »

Jamie Tate
Guest
Jamie Tate

There is nothing wrong with a good group home in a good neighborhood. My brother was in Oakdale and now living in a home that is more plush than I can afford. He works at the local super market and has a special friend— while his life out a living hell— it is pretty nice now.

This article seems to be foreshadowing that there is a plan a-foot to take these hard fought dignities away from people like my brother— is that true?

If someone can answer me– I would appreciate.

KP CHEN
Guest
KP CHEN

If an institution is what illustrates the deep structure of a culture, sometimes comparing apple with orange is not a bad idea …

In Taiwan, many people (30% perhaps) still prefer parents live together with younger generations, not necessarily under the same roof, but distance-wise quite close by …

What’s the psychology? That is a better (humane) institution, many argue.

I think, institution is word that recently takes some negative connotation; it means hard and cold and rigid.

In earlier time, it is quite the contrary. When something becomes quite good, good impressive, people then thought to ‘institute’ them.

Joe Nathan
Guest
Joe Nathan

Well done, Tom. Lots of good information here.

Terry Miles
Guest
Terry Miles

If we wanted to deinstitutionalize education in the process of instilling more self determination among students, I wonder what strong parent groups like those in this article would do. Parent groups, and communities in general, are the institutions we would aim to strengthen.

Parents need a good understanding of “mastery” in order to effect a real change in education. High-minded reforms like multi-age classrooms would seem scary to parents without understanding that mastery and working with older students are goals.

Ken Beedle
Guest
Ken Beedle

Always illuminating, thanks Tom

Jon
Guest
Jon

Good article Tom. It is important to treat everyone as eqauls and not to slip back to the mistakes of the past. People with disabilities have the right to live their lives as they see fit without outside interference or prejudice.

Tony
Guest
Tony

Thanks Tom, It is very good information. I see people with disability enjoy productive lives in the community. I will share the article with friends.

Mark Shauer
Guest
Mark Shauer

Nice to see a public policy that has been supported by democrats and republicans alike for decades— where our tax dollars are actually making a differece.

Thanks for the reminder.

Leroy Stephens
Guest
Leroy Stephens

Right on Tom. We all deserve the right to enjoy our lives without any form of prejudice. It is a blessing to live life as we please; to enjoy all the things that we take for granted. But most importantly at the end of the day we all want to be able to say that we did it our way.

Charlene
Guest
Charlene

As a 17 year employee of Community Living Services, Inc. it’s hard to imagine anyone of our people having to be reinstitutionized. Hopefully our government and governor will open their minds, hearts and wallets and continue to make Michigan the leader in Self Determination and Person Centered Planning.

Marc Craig
Guest
Marc Craig

Tom,
Thank you for bringing this topic to light at such a pivotal time. I think that in this context the term “institution” means more than just a building. I hope that we take this opportunity to make sure that people with disabilities and other “special needs” are fully included as valued members of every community.

Fran
Guest
Fran

Awesome article Tom!! Continue the awareness to support people with disabilities having the same rights and opportunity to enjoy living!!!!!

Pat Babcock
Guest
Pat Babcock

Thanks, Tom, for providing an important reminder that major public policy reforms can result in positive opportunities for people, improve communities, and achieve better and sustained investments of public resources when they reflect the commitment and common values that transcend partisanship. The real champions of Michigan’s’ community based living for people with disabilities are the men and women, and their families, who left isolated institutions and are now contributing members of their communities. In addition to the policy makers and professionals that you mention, your professional commitment and personal compassion as a community agency director in Wayne County and later… Read more »

Cynthia M. DeNardis
Guest
Cynthia M. DeNardis

I’m interested to find out what the statistics are on the homeless and how many are out on the streets because they were suppose to go ‘live with their families’ according to former gov. Engler. I personally know people who, because of their non-committal to their medications, cannot live with their families or group homes. So what happens to these people? The prison system ends up being the dumping ground. So they are still ‘institutionalized’. Where’s the oversight?

Billie
Guest
Billie

Tom – what an informative article! Thank you. You have brought many points forward that one needs to think about – do people have the right to choose how to live their lives? How would you feel if you were told what to do? Where to live? So why do people with disabilities be any different – they too want dignity and respect! Closing institutions and moving people into the community was a big step forward and no one wants to go back!

Michael
Guest
Michael

Well said Tom! It is important that people know about the opportunities for choice and self-determination that Community Living Services provides. Michigan should be proud of the fact that no such institutions exist here anymore, however, legislators and administrators should also be on guard against the type of thinking that created the institutions in the first place. We must continue to view the support services we provide as a means on enhancing quality of life for the individuals we support. Politicians and funding sources should be mindful of the fact that the institution-style living arrangements took away basic freedoms-of-choice. They… Read more »

Jim Dehem
Guest
Jim Dehem

Thanks Tom for the article and the recognition.
We have learned so much from many people including those you mentioned in the article. The thousands of great people who provide direct support each and every day and the non-profit organizations we work with make this all happen. They have been there since the time of the first steps to close the institutions and are now working hand in hand to support people in getting all of the same life outcomes that everyone wants–where disabilities don’t matter.

sherry xu
Guest
sherry xu

When we look at different societies, we do not just look at GDP or unemployment rates or state wide tests for childrens, we also look at the public service system is functioning well to support every single citizens and legal workers…
thanks, Tom, you always address something that may happen around us, but we forgot to mention or speak out.

sara jones
Guest
sara jones

Thanks Tom for another cogent examination into an issue that gains little attention but should be on the front burner.. You make a differnce in what you write

Calvin and Tricia Luker
Guest

Great article, Tom. In these times of contracting governmental funding, we need to be reminded and to continue to learn from our mistakes in past decades. We also must be ever vigilant in ensuring we continue toward complete community integration, whatever the economic climate.

Barbara Freeman
Guest
Barbara Freeman

Unemployment is going up, incomes down and pressure and competition is growing from around the globe.
Michigan cannot continue business as usual— as the usual times are long gone!
Gov Snyder must continue to restructure and change government at all levels. Anyone who thins the worse is behind Michigan and America are sadly mistaken.
Change is coming — ready or not.
Everyone will need to adjust to this new reality— that means– EVERYONE.

Shari
Guest
Shari

Excellent article, Tom. When I think about what it was like in those institutions years ago, it makes me cry. I’m very proud of the work we do at Community Living Services and also proud of the people we support. They are advocates for themselves and for others with disabilities. Two of the best examples I can think of are Ray and Andre! Thank you for highlighting all of the hard work all of the people mentioned in your article do!

Tod Norman
Guest
Tod Norman

Very well written. We should all be proud of the long road we have traversed….but also be mindful of the road ahead…bumpy or not, here we come!

Margaret OToole
Guest

Excellent and important article. As an advocate in Michigan for the closure of institutions, it will be the most memorable and gratifying experience of my career.
I was there – no one should live this way.

Lisa Wright
Guest
Lisa Wright

On behalf of all people living a better life because of the leadership at the state, local and community level— I say a big–THANK YOU!

Taylor
Guest
Taylor

Having a child with a disability as well as working with individuals with disabilities, I am heart felt to think that some people are considering going back to the old way of doing things. Today self determination is the morally correct philosophy to stand behind, regardless of this economic state. Everyone deserves to have an improved quality of life and treated with dignity and respect regardless of their disability. This is the year 2011—let’s moves forward and not backwards—life is hard enough and everyone deserves an equal chance at happiness!!!

Donald M. Fitch,MS
Guest

Tom; Brilliant article! we need you in New York! Don

Chris Hench
Guest
Chris Hench

All policy makers seem to be concerned about is slashing costs. I hope your article reaches them to remind them that people’s lives are at stake.

Bonnie Springstead
Guest
Bonnie Springstead

I think self determination for living arrangements is very important but it doesn’t work unless jobs, recreation and social opportunities are also available. Someone sitting alone in an apt. watching tv is sad. So I would encourage the promotion of community involvement to go along with independent living.

Jim Boarman
Guest

Tom, please let me know when it’s possible for you to travel to PR and wake up our government.

Lisa Monk
Guest
Lisa Monk

Thank you for writing this.

Martina Carroll
Guest

Yes, an excellent article. Here in MA we are still fighting to close the last few institutions; hope we too can soon say *all* of our state institutions are closed. And the warning is clear; Medicaid is on the chopping block and we have the fight of our lives ahead. Nursing home care is mandated under Medicaid, but all HCBS are optional. Cuts in medicaid funding will inevitably mean the loss of critical HCBS and an increase in institutional incarceration of people with disabilities. Only one suggestion for this great piece; in this paragraph: “One way that Michigan has taken… Read more »

Jeanie
Guest
Jeanie

All being said I appreciate and affirm the most of the comments re Tom’s article. Be careful, one and all, to condemn, defame, insinuate, marginalize, and degrade people’s ideas, visions and dreams of creative community. Don Hoyle’s and others’ views are often exclusive of many opportunities that provide excellent services in a unified way. Words and phrases like “group”, “together”, “all for one, one for all”, “congregate”, are good and positive words and do not deserve the negative implication that people like Don Hoyle have given them. Choice and self-determination is key and can most certainly been enjoyed in many… Read more »

Ben B.
Guest
Ben B.

I can’t even imagine giving my son up to an institution . He has taught me so much since he has graced our lives . I am glad to see that other families will be able to share the love and joy a special needs child can bring into your family and community. Thanks to the wonderful support of groups like ARC. Excellent article Tom…

Wendy Baxter
Guest
Wendy Baxter

Thank you, thank you, thank you! These are times of great worries for us all and especially so for parents who have children with disabilities. As we watch TV, listen to the radio and read the papers ALL we here is how broke we are as a state and nation. My family is held together by the support we recieve to help care for and provide our severly disabled son. Glen is a god send– but so much more expensive to care for then our other, “normal” children. We rely on the support of the taxpayers for the assistance to… Read more »

Anthony
Guest
Anthony

Michigan has been a leader— but, we are fading fast.

What happens in the next few months will decide on what path this state will take moving forward.

Sadly, it is often the weakest that get hurt first and the most— it is unlikly that the economy falls apart if it will be any differrent this time.

look at what is transpiring at the national level! Pure greed! It is ALL about money and making sure the rich stay rich– at the expense of the regular joes.

tony swanson
Guest
tony swanson

.. it is often said you can judge a country but how it treats those who dont have a strong voice. Indeed, Watkins highlights a crucial issue for so many families across the state. And raised it to let our officials know they do and can make a difference.. bravo!

andi berna
Guest
andi berna

I just hope some of our state leaders get a chance to read this cogent outline about a vital issue. Thanks for the uplifting report on an isue that will fall down fast if we dont work to make it better..

Travis
Guest
Travis

We need to stop the us and “them” mentality. That is, “what’s good enough for them is not what we would accept ourselves”. Who lives with many other unrelated people?
In our society, 50% of all married couples who love each other, have children together and vow to spend the rest of their lives tougher end up in divorce. Why would we expect that people with disabilities are any more able to live happily and with daily authority over their lives living with 5 to 20 or more people under one roof?

Bill
Guest
Bill

We need to consider what we would all want if we or a family member had a disability. Though that may not be the case now, we are only an accident, a newborn, a parent or a returning disabled soldier we feel appreciation for, away from that same need for support. If it hasn’t occured to you, every day you live is a day closer to having the aging process put us in the same position of need for support. Let’s keep our children, our parents, our soldiers and one day ourselves in our own homes and communities and not… Read more »

Bob
Guest
Bob

Jeanie: Self-determination is not a destination or goal. A Sel-determined life is one you live today and every day. It means having authority over your daily life not just “choices” of things offered you. The more people you live with the less control or authority you have over your life. In a group home you do not control who can enter your home. A care giver who bathes you is someone you may have never met or chosen. You eat, sleep and do what is chosen by management for the efficiency or organization of everyone else who you live with.… Read more »

Liz Bauer
Guest
Liz Bauer

All people are valuable. Each deserves to live, learn, work, and play as a fully included, respected member of his/her community. Over time the people of Michigan took giant steps to realize opportunities for full inclusion in community for everyone. There is still work to do and new threats to the progress that has been made. Tom has mentioned some of the players in this transformation. There are thousands more including himself. It took organized parents, a change in the way people are portrayed in the press, the passage of the right to education laws for all students (Free, Appropriate,… Read more »

John Barber
Guest
John Barber

Be aware– there is a move a foot to cut costs by the Snyder administration— they are going through the sham of community hearings now organized by the old firm of his chief policy staff.
Rest assured– the gains won over the years are about to come to an end.

I suggest advocates and parents get ready for a battle.

jonah zucker
Guest
jonah zucker

.. this should be mandatory reading for everyone in Lansing.. Truly shows our leaders can make a difference…


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