On February 16th, 2010, I, along with Scott Livengood, CEO of Alpha Supported Living Services, The Arc of King County staff and Advocates, addressed the Shoreline City Council regarding the issue of institutions. I would like to share with you the comments I made to the council:
Members of the City Council and others in attendance – thank you for allowing me to come speak with you today about an issue of great importance to people with developmental disabilities and their families.
I am Sylvia Fuerstenberg, the Executive Director of The Arc of King County.
On behalf of The Arc of King County, thank you for the opportunity to comment on the progress we as a nation, state, county, and community have made in the provision of services and supports to people with developmental disabilities.
As you know, Shoreline is the home of Fircrest School, an institution providing care for about 200 people who have developmental disabilities. What you may not know is that Shoreline is also the home to 422 people with developmental disabilities who receive support services in community settings, such as their own or their family’s homes.
As a collective of affiliated organizations nationwide, The Arc represents thousands of individuals with disabilities and family members — the majority of whom believes that people with developmental disabilities should live in ordinary neighborhoods, go to local schools, and enjoy community activities. We further believe that the state should support individuals and families according to their individual needs and believe that can best be accomplished in community settings such as family homes or in a home of their own designed to meet an individual’s unique needs and desires. The vast majority of people with developmental disabilities currently are living in these community settings. We further believe that it is more cost effective to do so, even when the supports are quite significant.
What I think you often hear is that the individuals served at Fircrest have much more significant needs and disabilities than those people living in the community. In fact, the vast majority of people who have the most significant needs already live in the community either in family homes or in Supported Living programs throughout the state most quite successfully at a much lower cost to taxpayers than life in state run institutions. We recognize that the decision to move a loved one to an RHC is not done lightly. Most families prefer that their loved one lives safely in the community with all the support they need to be successful and we recognize how difficult and scary this transition may be for many. It will take considerable collaboration for all of us, working together to realize this dream.
Since the 1970’s, we have been moving people from homes and institutional settings into supported living settings quite successfully. I have personally supported dozens of these moves for individuals once labeled “too disabled to live in the community” or “too medically fragile to live in the community.” Many of them live in and around Shoreline where they receive 24 hour support with roommates in regular homes with medical or behavioral supports as well. Currently, when a person is referred to the community an assessment is completed and a rate determined that will best support their unique daily needs in whatever setting they may live in.
I am fully supportive of the need to expand current services in the community and increase the pay rate to the hundreds of privately operated community programs serving thousands of individuals. One of the main concerns to families is the high turnover rate in community programs providing, despite the low wages, high quality services. In study after study that the state has conducted, it has shown a direct relationship between low reimbursement rates (low wages) and high turnover. This is of continuing concern to providers as well. The state must, through adequate reimbursements, demonstrate to families their long term support of community based care. We should all be working together to assure adequate funding to support a community of care system for all people and their wide array of needs.
We have also strongly recommended that the clinical services currently being offered in the RHC’s, such as Fircrest, be transferred to the community so that all people with developmental disabilities and their families have access to these vital, clinical services.
We are concerned about how the publicity of deaths of individuals moving out of state institutions has been blown out of proportion and used as a scare tactic for families who might consider the community option. There have been many studies and ‘quality assurance follow along’ reports done on the many hundreds of individuals that have been successfully moved out of state institutions in the past decade. These reports clearly show that the mortality rate for those in the institution and those living in the community are similar and not in any way related to their moves. DSHS mortality reviews found that no deaths were related to moving from an institution.
Furthermore there are almost 100 children with developmental disabilities living in community support settings in Shoreline. The Institute of Public Policy study of RHC’s, recommends the reinstatement of the very successful Voluntary Placement Program for children with significant challenges so they can stay in their home communities, close to their families and in their home schools. The VPP program generally provides community based residential support for children in their home communities in a shared parenting arrangement. The elimination of this community based, cost effective, preferred option is directly correlated to the expanded use of RHC’s for children, which has put considerable strain on the Shoreline school district. Supporting children and families in their own communities reduces the unbalanced demand on one community to provide for large numbers of individuals with significant needs, and it keeps families together. Families need this community option when all else fails.
Thank you for this opportunity. We appreciate that all the comments of the community will be considered as you examine choices for the future of our community and the people who reside here. Collectively, we have a great deal of experience in developing community options and supporting people with a wide variety of needs, hopes and dreams in communities across the state.
Sylvia Fuerstenberg, MSW