Hello and welcome to our very first blog post for P82! Thank you for stopping by and taking an interest in our efforts to build a home for men with severe and persistent mental illness. Whether you are a well wisher, curious observer or potential partner we'd love for you to stick around and get to know us. In a small way, I'd like to begin here on this blog by sharing snippets of our background and how we came to this point.
I'll admit it, I'm cheating on this first one. Below is an essay I wrote for our state's (Arizona) "Olmstead Plan". If approved, it will be published as an Appendix near the end. If you are not familiar with the Olmstead Decision and it's effect on our current system of care and housing for the disabled, please find more information here.
Understanding the over zealous enforcement of the Olmstead Decision is foundational in grasping one key component of our decision to pursue opening a private home for our son and others who struggle similarly. Also, our family prayerfully and intentionally made a decision to be open about our son's illness. He has a brain disease. There is nothing he did wrong to acquire his illness, he didn't ask for it and our family did not cause it. In fact, we believe the silence and unwarranted shame that surrounds these diseases only perpetuates the abysmal care these individuals receive (or do not receive). That being said, it is with Psalm 82, ("Give justice to the weak and the fatherless; maintain the right of the afflicted and the destitute") in mind that I share the following essay:
Biography:
Deborah Geesling is a stay at home wife, mother and grandmother. Married to her husband Matthew for 31 years, together they have 4 grown sons, a beautiful daughter in law and 2 grandsons. Deborah has made Arizona her home for the past 21 years where she has been actively involved her church and community. The experience of advocating for her disabled son has moved her into seeking to be a voice for those who cannot advocate for themselves.
Essay from a Family In Need of Housing:
As the mother and guardian of my adult son who has a serious mental illness, I can honestly state that I appreciate the heart and intent of the Olmstead decision. No person should unnecessarily be held in an institution that is inappropriate to their needs and needlessly segregated or discriminated against. However, in an effort to ensure that states comply with this ruling, it would seem that our system has shifted in focus towards the direction of independence and recovery with little flexibility and consideration for what appropriate care should realistically be for some individuals. We are placing the most severely mentally ill, those who are incapacitated by their illness and are unable to self-direct care, at risk for needless hospitalizations, homelessness, prison and even death.
According to a portion of the opinion recorded regarding the 1999 Supreme Court “Olmstead” decision, Justice Ginsburg states, “The ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk. Nor is it the ADA’s mission to drive States to move institutionalized patients into an inappropriate setting, such as a homeless shelter, a placement the State proposed, then retracted, for E. W. Some individuals, like L. C. and E. W. in prior years, may need institutional care from time to time to stabilize acute psychiatric symptoms. For others, no placement outside the institution may ever be appropriate.”
My son has been receiving treatment and support from Arizona’s behavioral health system for over 5 years. During his first year in the system he was able to live in our home with the assistance of an ACT team and on Court Ordered Treatment. After being released from his Court Order after one year, our son stopped taking his medications and quickly decompensated into psychosis. After a year of 4 more hospitalizations involving quick releases into community before being adequately stabilized, we watched helplessly as our son lost more capacity with each subsequent quick release. By the end of this year living in constant crisis, and while our son was in the hospital, we came to the realization that we could no longer care for our son in our home. With broken hearts we requested that the ACT team and hospital social worker find him a 24 hour residential placement near our home.
The first option presented to us was an apartment where he would live with another seriously mentally man with a supportive staff person on site. This apartment, we were told, was also near an elementary school. Our son was still psychotic and delusional, in our opinion still needing further hospitalization, yet we were told he was ready for release. We refused the option of the apartment for him as we knew it was not an appropriate level of care & support for his needs.
Upon our refusal, a level 2 Residential group home became available. It was near our home and it had 24 hour staff on site with a structured environment. Our son moved in to this home one week before Christmas. I found the home clean and the staff communicated well with us. It was a perfect fit for his needs. However, just after a few months of my son residing in the group home, our state’s RBHA moved to do a Notice of Action to remove him from the home on the basis that he was difficult to care for and did not always do his chores. Remember, this is on the heels of a year of crisis and psychosis, a year of 4 different hospitalizations and quick releases into the community. Now the state’s provider wanted to move him out due to lack of complying with chores. The group home staff and case managers offered up options of care for him that included a boot camp. Our son has a serious brain disorder with psychotic features and the state wanted to send him to a boot camp. Needless to say, my husband and I along with our son’s Psychiatrist advocated for him to continue to stay in the level 2 Residential group home and we were successful.
Our son has been in this group home for 2 ½ years now and lives there with 4 other men. He has only had one more hospitalization due to a medication change that did not work for him over 1 ½ years ago. In our state, Level 2 Residential group homes are classified as “temporary”. Our family must advocate for him every 60 days to stay in his current level of housing as we are constantly pressured and coerced to place him in a lower level of care. Our son’s psychiatrist, his ACT team, our son’s pastor and counselor are all in agreement that he should remain at this level of housing and support. As a former case manager said after our son was released from his last hospitalization, “Success for him (my son) is no further psychosis. If we can keep him from that, we’ve done well.” I would agree. He is able to live in community with a level of support that is appropriate to his needs and is near our family’s home.
The current model of care for the seriously mentally ill places an emphasis on independence without considering the individual’s history, needs or brain disorders. This can be catastrophic for those who lack insight into their illness and need more reasonable amounts of time to recover, if recovery is even possible at all. We must be honest about this and begin to allow for flexibility within the system of care for the small group of individuals who are incapacitated or we will continue to filter out the sickest and weakest individuals in favor of a system that only cares for those who can self-direct or are “easier” to care for.
As noted above, the Olmstead decision was never intended to push everyone in to the community without taking into account appropriate needs according to the individual. To do so is cruel at best. It is time for an honest discussion. We need realistic, compassionate solutions for long term housing along with crucial supports for the seriously mentally ill who need it. Streets, homeless shelters and prisons are not acceptable forms of care. Besides the incalculable human toll, we are wasting billions of dollars in an unnecessary revolving door system of care. It is past time for a new look at our system and to raise the standard for quality of life for the most difficult to treat individuals. It can be done, it must be done.
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