This is an archived article that was published on sltrib.com in 2010, and information in the article may be outdated. It is provided only for personal research purposes and may not be reprinted.
We share the concern for the health, safety and quality of life of all Utahns with disabilities expressed by parents in The Tribune's Sept. 5 article "Future of State Home for Disabled Worries Parents." We also agree that " … a broad conversation is urgently needed about the future of those most seriously disabled and the future of the USDC [Utah State Developmental Center] ... "
However, we think a discussion this critical must encompass the entire service system, not just the institutional side. Instead, we need to focus on getting individuals with disabilities and their families the right supports at the right time and in the right place.
Unfortunately, the position highlighted by the article represents a short-term solution at best. Large institutions were established in the 1800s when no other options were available.
Thankfully, today the integration mandate is embraced by all three branches of government in the form of the New Freedom Initiative, the Americans with Disabilities Act and the Olmstead v. LC decision.
As a result, an array of home- and community-based alternatives is now available that enables families to support their loved ones at home or to help them live as independently as possible in their community.
As noted in the article, Utah is following the trend. Only around 700 people with intellectual or other developmental disabilities remain institutionalized. Even so, the average cost of supporting them is often at least three times what it would be in the community.
For example, about 20 percent of the Division of Services for People with Disabilities' budget pays for the 200-plus residents of the USDC, while the remaining 80 percent supports almost 5,000 individuals in the community. Add to those costs the more than 2,000 persons who qualify for institutional placement but have chosen to wait for community-based supports, and it becomes clear why the state has to redesign its current system to more efficiently and cost-effectively fill the gaps families and communities cannot.
If it is going to succeed, such a system must be able to provide the kind of supports families like those in the article require. Primary caregivers should be paid or receive a tax credit so they can afford to continue to support their family member at home or in their community. Caregivers deserve to know their loved one will be looked after in the future through a formal or informal "circle of support."
By adapting models from the community-based mental health system, mobile teams can be deployed to stabilize individuals experiencing short-term crises at home or in the community.
Home health agencies need to be given the resources to increase their capacity to deliver skilled nursing services to persons who are medically fragile. Existing community-based providers who have specialized expertise in working with individuals with complex behaviors ought to be encouraged to expand.
Most importantly, the combination of a living wage and the potential for professional development and career advancement must be offered in order to attract and retain a sufficient number of highly qualified direct care staff dedicated to supporting individuals and their families at home or in their community.
Given that a growing number of Utahns with disabilities are living longer, healthier lives, our job is to help them become active and productive members of their communities. How we carry out this responsibility is no longer dictated by the limits of practicality, but by our beliefs about and expectations of others. Our approach will say a lot about whether we, as a society, wish to remain in the 19th century or to live in the 21st.
Adina Zahradnikova is executive director of the Disability Law Center; Claire Mantonya is executive director of the Utah Developmental Disabilities Council. Kelly Holt, chairman of People First of Price, is also a signatory.