Crisis Care in Crises

It’s not secret, our state has made a huge mistake. We have legislated a huge gap in care for our families experiencing life with intellectual disabilities, particularly if the person is 21 or under.

In 2011 our state passed SSB 5459. This bill had several critical errors – some based on faulty cost reports and projections and some based on poor judgement and understanding.

Poor Judgement and Understanding:

Crisis care, respite and intense out-of-home placements were eliminated for those 21 and under. The thought was that “children need to be at home with their families.” Yes, that is true but as one of the directors of the newly forming Crisis Stabilization Unit testified, “some families do not want their kids back home.” That statement made me physically ill because it stigmatized families who are not able to safely care for their children, no matter how much they WANT them at home, it is impossible. To say these families “do not want their kids” home shows such disregard and misunderstanding for the stress these families live with.

Five years ago I never, ever would have imagined that I would not be able to care for my son. On the eve of my 55th birthday, as I look back over the past 5 years, our family went from one of unity and cohesiveness to obliteration. The only reason that we are here to tell the tale is due to out-of-home placement at the intermediate care facility when my son was 15 years old. The heartache I felt making this decision was unbearable and still, today, it greatly saddens me that I cannot care for my son – no matter how much I would love to, I can’t.

In the past 5 years not only did my son’s dementia worsen which led to prolonged mania and psychosis – on top of his already profound developmental disability, but in my attempts to care for him, my health plummeted. I have had 27 hospitalizations and/or surgeries in the past 5 years with many complications. Injuries incurred from caring for my son began to build up over time and I felt like I basically imploded. The development of a chronic lung disease (autoimmune) and the related symptoms make it impossible for me to care for my son – yet people don’t see this part of the family’s lives.

Rather than understand, people judge – as the director did of the families who could not have their child return home.

Faulty Cost Reports and Projections:

Frances Haddon Morgan Center (FHMC) was closed. FHMC could care for 60 individuals with full, comprehensive, intense crisis care, provide much needed respite, and provided much of the care for our youth and for those with autism. There were some extremely costly errors which led to “savings” projections which were actually Costs. This never should have happened, but it did.

I can’t even begin to write about the stupidity of the decisions so am just providing this photo. I think it will give an idea of what happened – how much more money was spent to serve about 1/10 the people – certainly not a cost-effective or sustainable decision – serving much fewer people for over twice as much!

average cost per day per resident

According to Informing Families Building Trust (Developmental Disabilities Council) the passage of SSB 54559 in 2011 created a huge gap in services. 

Not only did this bill close Frances Haddon Morgan Center but also prohibited those under 21 from being admitted to an RHC.   Many of those in this age group would have gone to Frances Haddon Morgan Center for crisis care and respite. 

To bridge that gap, DDA opened a house in November 2012 which could house 3 youth ages 8-21.  The services are very similar to what was provided at Frances Haddon Morgan Center.  The goal was to take these children as they are in the community, stabilize them as much as possible and slowly integrate them back into the community.

There have been 7 children able to utilize these services, 2 are currently residing there, of the 5 who have left, only 1 was able to return home with supports.  The other 4 were placed in voluntary placement services – an intensive out of home placement for those under 21.

Please review the “savings” from closing Frances Haddon Morgan Center.  According to the reports we would have had a large savings to not only open two crisis stabilization centers but provide more community care.  Unfortunately, the projections were so wrong that we have now created more of a crisis.

Please do not let this happen again – It is critical to review the DD Audit and understand the information provided in that report is as skewed or more than the data provided in 2011 for the disasters that SSB 5459 produced.

 

2 comments on “Crisis Care in Crises

  1. Carole L. Sherman says:

    Cheryl,

    Thank you for your work. You have used the power of the pen to shine a light on terrible human services policies.

    At the national level, policy-makers (CMS; Congress) hear most office from the loud, dogged voices of representatives of groups whose aim is to destroy congregate care. A basic tactic in their agenda is to begin with closed admissions to public congregate care centers for “children” – omitting the realities you have described in this recent post.

    The groups have almost succeeded in eliminating the option of public human services for persons with profound cognitive-developmental disabilities under the age of 20.

    Make no mistake, however, the goal of influential (often publicly funded) groups is to eliminate all (public and private) congregate care and for all ages.

    Blessings on you and your work. Keep writing.

    C

    Sent from my iPad

  2. Carole L. Sherman says:

    Cheryl, Please add Joan Kelley (KS grandmother) to your Because we Care circulation list. Her address is shown. Thank you.

    Sent from my iPad

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