Legislative Report Shows Long Wait, No Answers for Families In Need of HCBS Medicaid Waivers

The Legislative Office of Fiscal Transparency (LOFT) released a report which raised questions about how the Department of Human Services is managing a very long waiting list for home and community-based (HCBS) Medicaid services. 

Families caring for someone with a developmental disability can wait longer than a decade for support.

This legislative group had three key findings including that DHS has not made real progress toward getting services to people in need. 

Those services might include supporting a person with an intellectual disability live in the community by providing a ride to work or help managing a budget. 

Right now, families like Ellyn Hefner’s applying for these services have no idea when they will happen. 

Hefner is the mother of a 17-year-old on the waiting list for a HCBS Medicaid waiver. 

“The waiting list has always been something that we have hoped for. That it would help him live in the community, help him get a job, have a relationship, be supported by friends in the community,” she said. 

Hefner’s family has been on and off the waiting list for 15 years. She said after today’s meeting, its still unclear to her what the plan is to serve waiting families.

“For parents to visually see that numbers are coming off that waiting list and being served when they come off, that would be something that I would like to see or hear. Actually being served,” she said. 

LOFT reports three key findings:

1. DHS’ management of the waiver program has not led to substantial progress toward the state’s goal of providing services to all those waiting.
2. DHS continues to serve fewer people than they have said they can serve. 
3. There are both immediate and long term opportunities to increase the number of people served.

DHS Secretary Justin Brown said they have an ambitious plan in the works now to eliminate the waiting list by funding health care service providers in the community, and assessing the more than 5,000 people on the list to figure out what is needed. 

“The primary reason behind the deep assessment that we’re doing is to ensure that we know what every single person on the waiting list needs today, and we can walk through the journey with them so we know also what it costs, and we can work with our partners in the legislature to find it,” Brown said. 

Advocates at Tuesday’s meeting said they hope lawmakers take action to ensure people on the waiting list get what they need.

“My hope is that lawmakers take that information, and put in the laws and the statutes, that will increase the reporting and ensure that there is transparency on where those dollars are going and how many people are getting connected to the services they need,” said Lisa Turner, Arc of Oklahoma CEO, an advocacy group for people with disabilities.