Some families perspective on community placement options in Utah
The current trend in public policy regarding the closure of state funded institutions has some groups and individuals calling for the closure of the Utah State Developmental Center. Those in favor of closing this facility that serves approximately 230 individuals believe individuals would be better served in more natural settings in the community, and that savings from the closure would result in additional funds for more people to be served in the community overall. Closure advocates also proclaim that needed supports will be available throughout the state to provide a better quality of life and ensure an adequate level of safety to all who access those services. Those who have called for this closure also believe that all families and self-advocates would prefer to have this facility closed.
However, there are some families and advocates who do not support the closing at this time. The state of Utah has maintained and improved the services at the Developmental Center that provides care for a population of people that would be would not be effectively served in a community setting, given the needs of those individuals. Families who have cared for these individuals in their homes know that the Developmental Center setting provides consistency, safety, structure, a sense of community and peers, and a highly professional level of care, is essential, and does not currently exist in the community.
Many individuals at the Developmental Center, and those who may need it in the future, are often those with co-occurring intellectual disabilities and mental illness. Especially if communication is significantly impaired, it is difficult if not impossible for families to receive adequate diagnosis, treatment, medication management and other therapies necessary for the individual and family to remain stable in the community. The mental health system in the state is not prepared to treat individuals in the context of their intellectual disability, and the ID/DD system is often ill-equipped to support with mental health needs in addition to their cognitive disability.
The provider system in Utah is not adequately prepared to meet the current demand for community services. In order to better meet the needs of those individuals already receiving services through the home and community based waiver system, significant improvements must occur. Utah also needs to address those hundreds of individuals on the waiting list to receive services. In addition, the argument that closing the Developmental Center would save the state money to serve more people is false. Individuals who are served at the Center will need the same level of care regardless of where the services are provided. Decentralizing services may actually increase the cost of service delivery.
With little professional and medical support available in the community, families are left with only one option: to seek a setting that will provide the most appropriate stable, long-term professional level of care available for their child to receive the supports needed to ensure his or her safety and a quality of life that is sustainable.
While families agree that those who can be supported in their homes and communities should be, we are uncomfortable with the removal of the Developmental Center. Any discussion of facility closings must coincide with evidence that the community system can address all of the service needs of individuals now benefiting from the facility. Therefore, the plan to close the facility is premature and irresponsible. Instead, we call for the following improvements to the system to alleviate the stress on the infrastructure of our family and provider system:
Advocates and legislators must recognize the need for additional funding to provide a greater range of services across the state.
The legislature must approve a higher rate of pay for direct service workers and those in the human service field to increase the quality of this vital workforce in this disability arena.
Education must be available to parents, families, and caregivers and others concerned with the care of those currently served in the Developmental Center and those who may be thinking of this as an option in the future regarding service patterns available throughout the continuum of life. Families should know all the options that are available and have a voice at all steps of the planning process.
While we respect the rights of all families and individuals to choose what is best for the well-being and safety of their loved one with a disability, no choice should be removed from the system, and the disability advocacy community should focus on evidence based service development and implementation to ensure that services provided in any setting are of the highest quality. We ask for support and respect for the choices of all individuals with disabilities, their families and caregivers. In the current system of care, the removal of the Developmental Center in Utah would only worsen an already deficient system. Utah is simply not ready for this move and as family members we will advocate for what is best for our loved ones.
Julia Pearce NADD
Family Issues Committee; US Public Policy Committee