Centers of Excellence – change from the bottom up

We often hear about Centers of Excellence but what does this mean?

I think it should be fairly obvious but apparently it’s not.  For parents, family members, people with intellectual/developmental disabilities (IDD), advocates, community members, healthcare providers, vocational and recreational support people, it generally means a community which interacts and supports those with IDD in all aspects of their life in a manner which provides the best quality of life for that person.  It is a collaborative effort from all angles.

This can be done but for some reason, even though we hear about needing centers of excellence, they are being broken down rather than built up by the very agencies which should be supporting them.

Here in Washington State the Developmental Disabilities Administration recently proposed a “feasibility study” at the cost of $601,000 to actually dismantle much needed Nursing Facility for those with IDD which also provides respite for many across the state, evicting the current residents from their home to create a “Center of Excellence” which has a totally different definition than one would expect. There are so many things wrong with this proposal which was most likely generated by a recent court decisions regarding people with mental health issues and the fact that federal reimbursement for care is better in the Developmental Disabilities Arena than in the Mental Health Arena.

This proposal needs to be stopped before it goes any further, wasting our valuable funds on things when those critical funds could be used for so much better, actually providing services and supports utilizing existing resources and building up what we have rather than tearing down, dismantling and rebuilding programs which would actually provide less than what we currently have.  This makes no sense.

Our state has a history of doing just that.  In 2012 Frances Haddon Morgan Center was closed, a Residential Habilitation Center  (RHC)which was home to over 50 residents and provided much needed respite care.  FHMC was also situated on the western side of the state providing an alternative which was closer to many people’s homes of origin.  This was a huge political mess with much misinformation provided and believed by those who made the decision but the decision was made which The Arc, the Developmental Disabilities Council and others celebrated as a victory.

At least one young man’s life was lost as a direct result of this closure and many others were displaced more than once from one home to another.  This alone is inexcusable.  The other issue is the misinformation regarding “cost savings” and the fact that many now are being denied services which could have been provided if FHMC was still operational.  FHMC is currently just a building, empty, sitting unused for many reason – it is a shame to walk through the campus and know what good use it could if only it would be allowed to be utilized.  Families and communities are hurting due to this decision.

What did happen was that there was no cost savings at all – in fact, just the opposite.  Rather than building several crisis care centers located strategically around the state, there has been one center for youth which has can serve up to 3 youth at a time.

The program which was built to “replace” FHMC has been open since December 2012.  To date they have served 12 children, only one of whom returned to their family home (which was one goal of this program). The current cost of this program is $1,165 per day.

This is the program for which FHMC was shut down for – how many people are now going without help, are suffering in crisis due to this huge error on the part of some so-called advocates?

We can’t let history repeat itself yet that is exactly what this “feasibility study” is doing.  It must be stopped before it goes any further.  Let’s look at what a “Center of Excellence” really is and build these up with the resources and available space we have – it’s all there already – it just needs to be utilized appropriately.

 

DDA CenterofExcellence

 

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.