It’s not science!

This post will provide some additional information to help clarify some of the mis-information that is being reported by Susannah Frame in her “Last of the Institutions” series on King 5 in Seattle, WA

  • The reports referenced by Susannah Frame are not “scientific research” but social research with many variables that cannot be generalized. The Policy Brief she shares is not a scientific research and the authors note that for those with severe ID with complex support needs, there has been a huge gap in the research.

From Charlie Lakin Research Article: (Susannah refers him as one of the countries foremost researchers)
“The higher level of support needed by people with more severe disabilities provides a greater challenge in assisting them to live in personal housing. The per-person cost of providing paid supports is one important such challenge.”


“They concluded that no economies of scale could be established in the existing research, except in very small residential settings, in which the decreased number of people in the home necessitated an increased staffing ratio. The critical point is reached at which there is a need for one staff member at all times, so that if the number of people in the home further decreased, the ratio of staff to residents necessarily increases. Unless nonpaid or differently paid supports are introduced, the per-person cost of support increases. ‘‘Such diseconomies of very small scale apply only in residential services when the service model or the residents’ support needs require continuous paid staff presence’’ [Lakin and Stancliffe, 2005, p. 324]. This is most often the case for persons with severe disabilities.


Lakin, K., & Roger, S. (2007). Residential Supports for Persons with Intellectual and Developmental Disabilities. Mental Retardation and Developmental Disabilities Research News, 151-159.

  • Susanna Frame reports that Washington is decades behind other states yet the most recent data (which she has also looked at and referenced) shows a different story:This is what Susannah Frame says” Washington state has a larger population of developmentally disabled adults living in state-run institutions than nearly every other state in the union.” Look at the data – I don’t see how Susannah Frame came to her conclusion – someone must have just told her that and she believed it.

    Data taken from “The State of the States in Developmental Disabilities” Fiscal Year 2013
    http://www.stateofthestates.org/…/intell…/state-profiles

Percent of IDD in state ICF ID and Nursing facilitiesPercent of IDD in private ICF ID and other facilities

Scott Livengood, CEO of the supported living agency Alpha Supported Living, weighs in with his comments about the cost of care.  Mr. Livengood knows full well what the cost of care for people with complex, high support needs are.  His agency needs to negotiate with DDA for hours to ensure that the residents have the support needs.  He also knows that those with higher support needs require more personal care and their care is more expensive.

I do not understand the extreme reaction that Mr. Livengood had with regards to maintaining safe building structures for those at the RHC.  One of the reasons that the costs are so high now is that the state has allowed the buildings to dilapidate and go into dis-repair.  Is it wrong to provide safe living conditions?  It is time that some efforts were put forth to maintain the residences.

And just like union workers at the RHC who have jobs and make a meager living, Mr. Livengood’s job is also tied to caring for this population.  One major difference is he has a hefty salary with annual bonuses and has had raises of 12 and 10 percent in the years 2012 and 2013.  His 2013 reported base salary (IRS Form 990) was $248,950 with bonuses and benefits bringing his full earnings to over $290,000.

This post refers to the King 5 Series “Last of the Institutions

 

Designing a Community

I was so glad to read the most recent posting in The Autism Blog entitled “Designing a Community for Families Living with Autism.”  This article which describes a community which families would like for their children describes inclusive, supported communities.  Many of the so-called “institutions” are actually on campus communities which are set up very similarly to the designed community in these parents dreams.

This is a major problem since our vocal Developmental Disability Advocates who steer policy making and laws (Developmental Disabilities Council, The Arc Chapters, National Council on Disabilities, Administration on Intellectual and Developmental Disabilities) do not support these parents dream for their children.  We hear form the above mentioned organizations that people should not live in campus type settings, they need to be dispersed so that they are “included” in community.

 

In reality, when people with intense support needs are dispersed into free-standing houses far from their friends and supports, they are not included at all – they are more likely imprisoned in that home.  There is no freedom to walk outside safely, there are restrictions and locks which prevent freedom and choice.  This is not person centered at all but policy driven without input from families – the real experts in what makes community for them.

The so-called DD Advocates will say that families do not want campus communities but have they asked and listened to what families have said.  I know they haven’t but we need to get them to listen to our expertise in what is best for our children.

 We are the experts and they need to listen to us too!