In 1988, Gay Finlayson’s 2-year-old daughter, Marit Rawley, was diagnosed with autism. It would take another two years before the child could obtain a Medicaid waiver that would allow her to access medical treatment and therapy in New Mexico — expensive services that at tens of thousands of dollars a year can create massive financial hardships for even middle-class families.

Three decades later, people seeking the same benefits spend an average of 13½ years waiting to be granted a developmental disability waiver under Medicaid, an issue that affects more than 5,000 New Mexicans diagnosed with autism, Down syndrome, cerebral palsy, seizure disorders and other developmental disorders.

The majority are children.

“The waiting list has grown and grown,” said Finlayson, the education and outreach manager at the Center for Development and Disability at the University of New Mexico Health Sciences Center. “The state just hasn’t been able to keep up.”

Gov. Michelle Lujan Grisham last week directed the state’s Department of Health and Human Services Department to develop a new Medicaid supports waiver that would that would help bridge gaps in services for New Mexicans on the waiting list. The Legislature allocated $1.5 million for the Department of Health to study and develop the waiver, as well as $7.5 million to help roughly 300 people get off the list.

Those changes are scheduled to begin July 1.

“It is going to make a dent,” Finlayson said, “Figuring out how to serve people while they are waiting it is critical.”

Developmental disability waivers were created for states like New Mexico that do not have institutionalized care. The waiver connects individuals to Medicaid, plus additional therapies, respite services for overtaxed family caregivers, employment training and other services.

Many of those most affected are families who are supporting a child transitioning from high school to adult life, Finlayson said. For children who have used school programs and resources, high school graduation — without a waiver — likely means a sudden end of services.

“One of the family members probably has to quit work. … If there are no services, there is no ability for the person to be out and about in the community without their family,” Finlayson said. “They have learned all these things in high school, and then all of a sudden they are sitting on the couch because there are no services.”

Health Department Secretary Kathy Kunkel said she hopes public input will help inform the state’s understanding of what gaps in services exist for people on the waitlist. The state has developed two surveys that will go to more 1,600 families and individuals. The surveys are distinct for people below and above age 15.

The documents asks broad questions about whether waitlisted individuals are currently accessing behavioral health services, home health aides, physical or occupational therapies, transportation needs, employment outreach, or help with bathing or cooking, among a number of other questions. It also asks respondents to identify what services would help them become more independent, such as technology or vehicle modification.

The survey, Kunkel said, will tell the state where the gaps are.

“It was my experience in the Legislature that it [the supports waiver] was a priority for everyone, for advocates, for families, for the House, the Senate,” she said. “This is something everybody wants to see happen.”

While the more than 20 states with supports waivers each have different program structures, Kunkel said New Mexico has narrowed its focus to a handful of states. Some spend as little as $3,000 per person each year on the supports waiver and others close to $40,000. On average, states are spending between $20,000 and $25,000 per person, Kunkel said, adding she hopes to get the waiver in place by January.

Advocates and public health experts agree New Mexico’s unpredictable state revenues, largely dependent on oil and gas and still affected by the 2008 recession, have made it difficult to appropriately allocate the funds necessary to whittle down the waitlist and fund services.

Robert Kegel, whose son, Eric, has cerebral palsy, has been advocating for disability rights waivers since the 1980s. The state closed down institutional care for developmentally disabled individuals in the 1990s, but Kegel said it since has struggled to appropriately fund community resources.

“I have been advocating for years to have the supports program, and it has finally happened,” he said. “My dream has come true.”

Reporter

Rebecca Moss has covered the environment and Los Alamos National Laboratory for the Santa Fe New Mexican since j2015. In 2018, she was selected to participate in the ProPublica Local Reporting Network.