Reimagine Community Mental Health In A Self Determined Way
March 11, 2016
An opportunity exists to light a candle rather than simply curse the darkness. In the heat of discussion regarding the Michigan Governor’s Executive Budget proposal for 2016-2017, I see a light. The light generated by the discussion is the light of opportunity.
I am joining my colleague and friend, Tom Watkins, the former state superintendent of schools and state mental health director and current visionary leader of Detroit Wayne Mental Health Authority (www.dwmha.com) in seeing this “threat” as an opportunity to reimagine and reinvent the public mental health system in ways that moves more dollars from administrative layers and bureaucracy to service and support for people in need. See: The Sky Is Not Falling, Let’s reimagine and reinvent Michigan’s behavioral health system: http://domemagazine.com/tomwatkins/tw021916
Former State Representative, Phil Cavanagh recently wrote in a column on these pages entitled, DWMHA: Mission Driven Government That Works. “DWMHA is leading the state in its programming by utilizing best practices, data driven outcomes and striving for the greatest level of independence of the 70,000 persons with mental illness, developmentally disabled and substance uses disorders they serve annually.” I concur (http://domemagazine.com/cavanagh/pc030416).
The Governor has proposed transferring the funding currently going to the PIHPs (not for profit public entities) to Medicaid Health Plans (for –profit private entities.) There are advocates for both systems. To my mind, neither system is the best answer. Both systems are highly bureaucratic and costly.
Thoughtful And Bold Leadership
In an unprecedented and heartwarming move, Representative VerHeulen removed the language from Section 298 of the House MDHHS budget. The people spoke, Representative VerHeulen heard them, and took action. This action clears the way for more creative thinking about reform of the system. There is much we can do to unbundle the system we built over the last 50-plus years so that it can serve more people better, and pay the individuals who actually provide the services a living wage. Parents, advocates and consumers are excited about the possibilities opened up as a result of his action. Thank you, Representative VerHeulen, for your leadership!
Currently, every dollar appropriated to support people who use behavioral health, I/DD, SUD, SED and autism services, passes by contracts through 3 or more layers of high cost bureaucracy. By the time funds reach the actual beneficiary of service and the individuals who provide their direct care, there are pennies left for the individual’s supports and services and a poverty-level wage for the direct support professional. This is unconscionable.
It is time to turn the system on its head. It is time to adhere to the principles of self-determination with fidelity. The litmus test question when an individual evaluates the service or support received is: “Did you ask me?
The principles of self-determination, freedom, authority, support, and responsibility must guide our advocacy efforts. We cannot sacrifice the basic human right of persons with disabilities to direct their futures; have control over how they live their lives, where, and with whom; and have authority over the resources that support them.
The elements of patient-centered plans—based upon the principle of self-determination—should dictate the system requirements. Let’s advocate for what ought to be. It may look different from anything we have now or is being proposed by the Governor.
Lt. Governor Brian Calley Steps Up
We need to start with the belief that all people are valuable.
While those wielding power over both systems debate the future direction of state funds, people who use the services have a huge opportunity to advocate change that leads to progress. Lt. Governor Brian Calley has offered to lead a work group to address the various concerns of providers and recipients of service. As a parent and advocate I appreciate his leadership. I am told the work group will include individuals who use supports and services as well as their direct support professionals. I hope they will be asked what they want and need to live dignified, self-determined lives fully integrated within their communities.
I have advocated the rights of individuals with intellectual/developmental disabilities, behavioral health and other conditions at state, national and international levels for 58 years. When I began my career as a speech therapist most men, women and children suffering these conditions were either living in an institution or hidden at home. There was no right to education in 1958 and community-based supports and services were years away.
The driving principle in my life was and still remains: All people are valuable.
Believing that means that all should have a say in their life circumstances. While my earliest efforts were driven by principle, they got a turbo boost in 1967 when the third of our four children was born with profound disabilities. Ginny Bauer could not suck or swallow, did not respond to light or sound, did not move on her own, and frequently needed to be resuscitated. When she was nine months old, the eminent pediatric neurologist in our area conducted a week-long exam and then told us, “She is blind, deaf, and profoundly retarded. Put her away and forget her.” That was the “treatment” of the day.
Fortunately, my training and experience saved her from that death sentence. I recruited and trained 40 volunteers who worked in shifts in our home for years. We kept Ginny moving. She was touched, sung to, and involved with her family and community. In 1972 The Arc of Pennsylvania successfully sued on behalf of her right to an education and Ginny finally got to go to school.
Today Ginny is 47. She is not blind or deaf. She can walk. While she still has not spoken, she communicates effectively with gestures and other behaviors. Over the years and with constant, appropriate supports and services, she has increased her skills (remember that her’s is a “developmental” disability). She is a “force of nature” so to speak. She is valuable and she has influenced more lives than I or others ever will.
I tell this story (too briefly) to make the point that from nothing came something. With advocacy we got the right to an education, community and behavioral health services and supports and more.
Sadly, over time these systems grew bigger and bigger, and so-called “reforms” consisted of adding more layers of oversight. Lots of people who set out to do good ended up doing well and as the service system grew and grew the amount of public support available to the beneficiaries and those who provide their direct care, shrunk. It is unconscionable that direct support professionals who foster the development of the skills and knowledge of the Ginny’s of our world earn poverty wages working 12 hour shifts, while those working in the multiple contractual layers above them make six figure salaries. We can change this. The light of opportunity is shining bright. Individuals who use services need to be asked what they need and desire. Providers of these services need to listen and act accordingly.
What we have today grew from nothing. Just as the tailor of a poor-fitting suit tears out the seams and redesigns it to fit right, we need to tear down this bureaucracy and redesign it to fit people seeking to live self-determined lives as valued citizens in our communities. It will take work. All worthwhile endeavors do. It is possible. It can be done.
Lt. Governor Brian Calley has created a forum seeking our ideas, hopes and dreams to reimagine and redesign a system of care for people we love. He has challenged us to: “Approach this opportunity as if we just discovered this place called Michigan and we had 300,000 people with disabilities that needed care and support, and each year $2.4 billion washed up on our shores to serve these fellow citizens.” He is pushing us to help redesign a system around our shared values to help and support our loved ones.
I and others are rolling up our sleeves and ready to get to work. We will continue to advocate keeping the “Community” in our mental health system.
consults worldwide on human rights and civil society. The mother of a woman with profound intellectual/developmental disabilities, her professional credentials span the fields of education, behavioral health and advocacy.