By Eric Mitchell
In response to Mary Paulsen and Carola Zitzmann’s op-ed, ”Developmentally disabled need safe, secure home” (Opinion, Dec. 11), my friend and colleague Laura Boswell and I want to share some information with the thousands of Utahns who have a family member with a disability.
We are siblings of persons with intellectual disabilities, and we work as professional advocates as a result. We help families, friends and clients navigate the complex web of supports and fight for their most basic rights.
At the point in time that our parents are no longer able to care for our siblings, we will have primary responsibility for their care. We have agreed to continue our parents’ legacy of supporting our loved ones at home. We do not accept this responsibility lightly. We know all too well of the emotional, physical and financial sacrifices our parents have made to ensure that our families remained intact.
Most siblings we know do not believe that our brothers and sisters should be placed in segregated institutional settings that were created long before supports were available in the community. No matter how clean the facility or nice the staff, living in a 12- to 260-bed care center is something we simply cannot and will not accept.
We believe that separating our loved ones from family members, their communities and natural supports is wrong.
Data from the American Association on Intellectual Disabilities and countless other groups demonstrate that the vast majority of individuals do better when they receive community-based supports.
While cost is not the only consideration, our current economic realities demand that we carefully examine how every dollar that supports our most vulnerable citizens is spent.
We know that the average cost, in state dollars alone, for a year in a private intermediate care facility is $15,841. That same year spent at the Utah State Developmental Center costs $39,098, while an average community residential placement is only $13,137.
We respect the fact that families have few options and these decisions are heart-wrenching.
We know the infrastructure is not currently in place to meet the needs of all Utah families, but this is a problem we can solve, if we choose to.
In a state known for the importance it places on home and family, we still have the opportunity to choose what, and more importantly, who, we value. We can choose inclusion over exclusion and acknowledge that sending our loved ones to live apart from us will only sow the seeds of division – divisions that ultimately separate and sequester people with disabilities from the broader community.
When the U.S. Supreme Court announced the Olmstead decision in 1999 and President George W. Bush unveiled his landmark Freedom Initiative in 2001, we cheered at the wisdom of declaring once and for all that people with disabilities have the right to live in their own home, not segregated away from the rest of society. Nearly a decade later, little has changed, and our loved ones and families face all of the same challenges.
We realize that we may always have fundamental ideological differences with the generation before when it comes to caring for our brothers and sisters, but we can no longer afford to pit the thousands of families who are waiting for community-based supports against those who prefer institutional care.
It’s time to work together to find the best use of limited public funds and community resources in order to support the needs of the next generation of people with disabilities and their families.
Eric Mitchell is director of community relations for the Disability Law Center. Laura Boswell, an attorney for the Disability Law Center, is also a signatory.