Autism advocacy group hosts event meant to galvanize support for legislative priorities

Jan. 20—When Clemy Garza began connecting with others in the autism advocacy community, she realized the trials and tribulations she has faced trying to secure services for her son are "actually quite normal" for the parent of a child with autism.

"When you see the scope of the problem, [you see] it's really critical that we all get involved," Garza said. Autism "touches so many lives," she said, "this is one of those few topics that truly touches all of us."

Disability advocates want to push to make that process — and the lives of those with autism — easier through many initiatives during this year's 30-day legislative session.

Self-advocates and their family members have been pushing for that legislation in New Mexico for years, and while the state has made some important recent gains, it has a long way to go, said Joel Davis, chairman of the state's Developmental Disability Council and vice president of Elevate the Spectrum, a nonprofit founded by parents of children with autism.

On Saturday, the organization held a postcard-signing event to galvanize support for laws to strengthen prohibitions against restraint and seclusion of students with disabilities and expand services for children and adults with autism. Garza hosted the event at one of her McDonald's restaurants just south of Rio Rancho, where Elevate the Spectrum is based. About 40 people and a handful of state legislators attended, including Reps. Joshua Hernandez, R-Rio Rancho; Kathleen Cates, D-Rio Rancho; Elizabeth Thomson, D-Albuquerque; and Tara Lujan, D-Santa Fe.

Because this year's shorter session, which kicked off Tuesday, will focus on the budget, autism advocates' legislative priorities this year include securing more funding for the Office of the Special Education Ombud and for providers serving people in the Developmental Disabilities Waiver program, Davis said. The waiver program runs under the state Department of Health's Developmental Disabilities Supports Division.

Legislators created the Office of the Special Education Ombud, a program of the Developmental Disabilities Council, in 2021, to help students and families navigate the many complexities of the special education system in public schools. Since its launch two years ago, the office has helped about 440 families who are "frustrated, anxious and suffering because their school is failing to meet their student's disability-related behavioral needs," says the office's annual report issued in December 2023.

Alice Liu McCoy, executive director of the Developmental Disabilities Council, described the program as "growing like gangbusters," with families across the state reaching out almost daily to seek help.

Although the office's budget request this year is "very small," McCoy said — $60,000 of non-recurring funding for legal counsel — Davis hopes the Legislature, either this or next year, provides funds for an expansion of the office. It currently can pay five full-time employees and five consultants, but needs "at least" four more full-time staff, he said.

Providers who directly care for people with autism enrolled in the Developmental Disabilities Waiver program, which waives income and other requirements to access Medicaid, also need a big pay boost, Davis said. The program served over 4,100 people in the fiscal year 2022, according to a report last year.

Pay for direct care positions typically starts at $13 per hour, only $1 above the state's minimum wage, which in no way reflects the specialized skills workers need to care for people with high needs, he said. Elevate the Spectrum leaders say that pay should start at $19 per hour.

The state does not directly set the pay for caregivers in the waiver program. The Developmental Disabilities Supports Division sets Medicaid reimbursement rates to providers based on rate studies conducted by third parties while the providers determine pay for direct care staff, Department of Health spokeswoman Jodi McGinnis Porter wrote in an email.

Another issue Elevate the Spectrum hopes legislators address through more funding for professionals is long wait times for autism evaluations. Wait times can stretch over a year, which is a problem because adults need a diagnosis to receive accommodations at work and people of any age need a diagnosis to get therapies covered by insurance, Davis said.

Davis and his wife paid $50,000 out of pocket for therapies for his daughter before she was diagnosed with autism spectrum disorder at age 4, after a prior evaluation had been inconclusive, he said.

And there is no question early interventions and ongoing services are life-changing for people with autism, Garza said.

Her now 40-year-old son who has Asperger's syndrome, a developmental disorder under the umbrella of autism spectrum disorder, can live at home with proper support, she said. But he was not diagnosed with Asperger's until age 18 and lived in a nursing home for 11 years "before they were able to get the therapies and diagnoses all put together so that he can live at home," she said.

Now, he volunteers at a community theater and food pantry in Rio Rancho and is writing a novel, she said.

"It's important to see people with disabilities for their capacity to contribute," she said. "My son, he gets great satisfaction out of being able to volunteer and contribute something."

But "it's taken incredible advocacy to get help for him," she continued.

"To see the challenges [others] have, it's heartbreaking. Sometimes you're not just fighting to help your child, you're actually having to fight the system to do the things they're legally required to do."

That's especially true in schools, said advocates, who want to reduce the frequency students with autism are physically restrained or secluded as a response to disruptive or violent behaviors.

Nationwide, students with disabilities represent about 14% of K-12 students but make up 81% of students restrained and 75% of students secluded, according to a November report from the U.S. Department of Education's Office for Civil Rights.

In 2017, New Mexico lawmakers banned the use of restraint and seclusion except in case of an emergency and mandated schools immediately notify parents of any incident of restraint or seclusion.

But that still doesn't happen, Davis said, referencing personal experience and a 2019 report by the news website Searchlight New Mexico on restraint and seclusion in Albuquerque Public Schools.

"What's more beneficial and healthy for everybody involved, instead of manhandling children who are having meltdowns or ... communication issues, is to nip it in the bud with positive behavioral supports and de-escalation," Davis said.

A bill to reform the special education system failed in 2023, but disability advocates have renewed momentum after Gov. Michelle Lujan Grisham, by executive order, created an Office of Special Education in the Public Education Department in May, he said.

"There's going to be a giant push next year," Davis said, adding he expects a bill on restraint and seclusion in 2025. "We're going to keep working on it until we make some movement."