EXPERIENCED PARENT REFUTES KING-5 SERIES' UNFAIR FOCUS

Thank you, Cheryl, for another lucid letter to Susannah Frame!
Dear Susannah,

I am writing today with information regarding supported living and the residential habilitation centers.  Your series “The Last of the Institutions” has sparked much interest in the programs and services for our citizens with intellectual and developmental disabilities.  It needs to be clarified that there are quality programs and services in both the community and habilitation center options – and there are problems in both scenarios too.  It is unfair to focus only on the good in one situation and the undesired in another situation and then compare them.

I know from research (Reviews, Evaluations, Cost Reports, and community discussions) that two of the agencies you highlighted (Provail and Alpha Supported Living) are two of the quality programs in our area.  In fact, my son utilizes services from both of these agencies and I believe he has the dream team working for him.  They hold high standards and have integrity.  They are both non-profit agencies.   Unfortunately, not all services and programs hold these high standards.

For instance SL Start, a supported living agency in our state (for profit) has had issues with safety in the homes of their supported agency clients.  One recent Certificate of Evaluation report cited faulty lighting fixtures hanging by duct tape with unprotected lightbulb as the source of light. Other issues were holes in walls and no working curtains on bedroom windows.   One young man I know has a 1:1 caregiver and enjoys going out but the caregiver only sits on the couch and refuses to take this young man out.  The mother has complained to her case manager and the response that she hears over and over is “we are doing the best we can.”

Ambitions, another for profit agency, has a home in Shoreline.  There have been multiple incidents at this home involving police.  A woman who needs 24 hour supervision often leaves and the caregivers are unable to go after her since they are alone and there are others to care for in the home.  This woman has been seen getting into strangers' vehicles and driving away, going barefoot on cold, wet days, has been reported as being lost only to be found at Northwest Hospital ER and recently had a foot infection.  She often calls 911 or an ambulance demanding that she be taken to the hospital that she wants to leave.  There were over 10 incidents at this home in 2014 and they became well known to the sheriff and Fire Department EMS.  

The officers are well acquainted with the residents of this home and have advised the house and/or management team the many false calls were a misuse of public emergency services and have encouraged them to develop a better plan.

You report that residents of the RHC are segregated, but in talking to the families of the residents this is not their impression of the campus communities.  I do not recall you speaking with any residents about their choices and why they love living at the RHC.  I know for a fact that the residents are not segregated – cut off from the community at large.  It is a fallacy that the residents are locked away against their wishes.  This myth is reinforced by comments of those who have not even set foot on the campus or worked with the residents and/or their families.   It is also perpetuated by the continued reference to the atrocities of the past as if those practices are still in play today.  We have a very different system in place now.

We need to understand that there are quality services and really poor services in both community and RHC settings.  It is critical to look at the quality services, figure out what they are doing right and cite the programs that are not meeting standards.  We need to pay the providers for the work they do and stop the quota on allowed beds.

We need to build services where the people live and where they want to be served.  We should not force them to move to another city/county because that is where the “bed” in the community is.  We hear of choice in the community but in reality the residents do not have a choice of housemates or homes and there is a limit of spaces allowed by the legislature.  There is a huge need for more services but the agencies are limited in what they can provide.  The rules look at vacancies – not necessarily where those vacancies are or if they are appropriate for resident compatibility.  Is this really choice?

Thank you,


Cheryl
Cheryl Felak, RN, BSN
Because We Care – Beyond Inclusion
Seattle, WA