One of many issues addressed in April 2015 by the Governor’s Blue Ribbon Panel for Developmental Disabilities was how to better serve thousands of Oklahomans seeking community services from the state Developmental Disabilities Services Division (DDSD) of the Oklahoma Department of Human Services.
Many residents on a wait list — that is approaching 7,500, according to one recent estimate — are seeking a Medicaid waiver, a funding mechanism that allows the state to offer community-based services to treat the developmentally disabled at home.
Medicaid waivers are sought-after because they can provide thousands of dollars in medical care coverage for services like in-home skills lessons, occupational and speech therapy, and access ramps.
But part of their funding comes from a state match to federal monies — which, the panel noted, “has continued to be a limiting factor” on approving waivers.
Oklahoma officials are aware other states have waiting lists of people seeking Medicaid waivers too. But they want to make their process quicker and more intelligent for their residents.
Last spring, panel members recommended establishing an executive council of heads of agencies providing support services to people with developmental disabilities.
The panel also called for improving online access to information and/or creating a disability information portal “to provide comprehensive information about services and resources in an easy-to-understand manner that is helpful to families who are navigating systems on their own.”
Melissa D. Fenrick, a health planning coordinator at the Center for Health Innovation and Effectiveness and a member of the Blue Ribbon Panel staff, said residents can spend years on the waiver waiting list only to learn they or a family member do not qualify. In other cases, residents who have applied for the waiver just need information, a referral to a support group or something the waiver may not provide — but are unable to find those resources elsewhere.
"Waiting eight to 10 years is not a good way for people to receive information and support," Fenrick said.
The portal, described as a "first stop" by Wanda Felty, who works at the Center for Learning and Leadership at Oklahoma’s University Center for Excellence on Developmental Disabilities, aims for quicker resolutions.
Fallin issued an Executive Order on March 27, 2015, creating the Executive Council on Developmental Disabilities and authorizing it to keep improving the range and quality of services available to the developmentally disabled.
Her order also mandated improving the "ease-of-use and prominence of information" on state websites, "including the potential creation of a uniform disability information Web portal."
In October, the Oklahoma Health and Human Services (HHS) Cabinet Committee, and the Deliver Interoperable Solution Components Utilizing Shared Services (DISCUSS) approved funding the portal.
The portal project’s total cost is projected to be $1.2 million, the chairman of the DISCUSS finance committee said. It will be funded by state and federal monies.
The governor, who had said in her Executive Order that much important work would go unfinished when the Blue Ribbon Panel sunsetted on April 1, 2015, applauded the groups' efforts.
"We would like to work toward a system that empowers and supports families of individuals with intellectual and developmental disabilities, as well as our aging population, so they can thrive at home and in their community," she said in a statement in October.
Last month, state officials were selected to develop the portal and began in earnest. Oklahoma plans to have the portal's first phase up and running by the end of 2017, providing visitors with a list of health-care resources.
Felty, who is vice chairwoman of the Advisory Committee to the Executive Council on Developmental Disabilities and a parent of an adult child with developmental disabilities, said in a statement that the portal's first phase should focus on providing day-to-day support. That's one of three types of help, including informational and emotional assistance, that families and individuals typically need.
"If you build it, everyone will come and that’s okay too," she told Government Technology, indicating the portal will likely also get clicks from Oklahoma residents seeking answer to other health-care questions.
The portal's second and final phase, due by the end of 2018, should offer prescreening tools for Medicaid and Medicaid waivers.
Family members of people with developmental disabilities have heard the state promise change before, Felty said, adding she is hopeful the portal will transform the process and connect families with others who have experienced what they're going through.
"What we’ve learned from experience, as well as [from] families, when they’ve got a baby that just got a diagnosis — they don’t need to worry about when their baby is 30 years old," she said. "They need to worry about, 'When I get out of this hospital, am I going to be okay?' A professional can’t necessarily tell me that, but another family can."
Nicole Prieto Johns, a program manager for DISCUSS, said the idea of the portal using available technology and leveraging resources Oklahoma already has is an example of the state working smarter, not harder.
She said state officials, like the taxpayers they serve, are frustrated by the waiting list too.
"I have to tell you, the individuals who work in these agencies, it’s not just a job for them," she said. "It’s a heart and a passion."
