THE CITIZENS VOICE
LETTER TO THE EDITOR / PUBLISHED: JULY 23, 2017
What Happens to My Child After I Am Gone?
The imminent closing of Hamburg Center, a state facility for the intellectual and developmental disabled (IDD), has prompted State Rep. Kerry Benninghoff, R-171,Centre County to submit House Bill 1650 to the State House Committee on Health. He had taken this action with a number of co-sponsors recently on July 8 to basically close all four remaining state facilities — White Haven State Center, Luzerne County; Selinsgrove State Center, Snyder County; Ebensburg State Center, Cambria County; and Polk State Center, Venango County — as a cost savings measure to assist in balancing the fiscal year budget 2017-2018 and somewhat thereafter.
For quite a few years now, the closure of these state facilities has been the target of major advocacy organizations — The ARC of Pennsylvania, The Disability Rights of Pennsylvania, The Waiting List Campaign, Vision for Equality (Temple University), Self-Advocates United as 1(SAU1), etc. — as they stress in their dissertations when making public comment. They also stress that all intellectually disabled individuals would be better served in the community (group homes) and that there would be a cost savings which would enable more services available for people on the “waiting list” for services.
Over the past 25 years there has been a tremendous exodus of “self-advocates,” residents of state centers, of which many successes have been revealed - and many failures which have been kept from being transparent. The successes have developed into a philosophy that all intellectually disabled will thrive better in the community, and that is just the way it is. County caseworkers have been instructed — only by state policy and not law — not to even offer state facilities as a provider of services for even the most fragile IDD individuals — taking away their right of choice even though the court system allows for a process to do so.
Our daughter, Maria, was born in 1968; and by the time that she was 12 she became a resident of White Haven Center after it was determined that she suffered from profound intellectual and developmental disabilities. A number of attempts at residing in group homes and receiving services in the community failed to give Maria a quality of life comparable to her peers. With a recommendation from the Children’s Service Center of Wilkes-Barre and her primary caseworker, a process took place whereby she was admitted to White Haven Center. Today, after 37 years, she spends her time with friends who she has been with since day one and staff who have known her for years. Twenty four hour nursing care is available for all residents and other services are second to none. Mom and Dad visit Maria at least once each week and continue to wash her clothes and linen. Her family will always be supporters of those less fortunate. Today, Maria is still unable to walk or stand by herself, cannot talk or express pain and very seldom cries, but she smiles when she sees a familiar face and our heart tells us that she knows her family. White Haven Center, an “institution,” is responsible for that.
Keep in mind that there are always two sides to a story and the old adage “not one size fits all” comes into play here. My personal belief is that there are certain IDD individuals with severe and profound disabilities who can do better and will have a better quality of life, long term and with familiar staff, under the care and services provided by a state facility such as White Haven Center. Rather than close our state facilities, the excellent services which they provide should be considered to be used as part of a wide range of attainable services for those on the emergency “waiting list” resulting in the depletion of that unfortunate list. A facility and campus such as White Have Center is void of the racial epithets expressed openly in the community, the drug deals and usage of drugs experienced on our streets, and acts of violence which have now become the norm and an everyday occurrence in our homes and outside environments.
There is certainly a lot more to this issue than what is stated here and an open debate is deemed necessary and asked for. In the end, this bill must be defeated as it will only be a “pile driver” into the lives and hearts of many of our most fragile Pennsylvanians while taking away their right or legal guardian’s right of choice as documented by a 1999 Supreme Court decision referred to as “Olmstead.”