Copyright © 2018 Albuquerque Journal
Cynthia Byrne knows she’s on the waiting list, but for what, exactly, she isn’t sure.
It has been 12 years since her parents signed her up for the state-run program that helps people with developmental disabilities participate as active members of the community – through therapy, help with employment and other services.
Byrne, a 20-year-old woman diagnosed with autism, is one of about 4,500 people waiting for her allocation of funding through what’s known as the Developmental Disabilities Waiver, or DD Waiver.
The waiting list grew 27 percent over a recent four-year period, according to state records.
And the state didn’t provide any new funding to take people off the waiting list in a recent 12-month period – due to a funding shortage, officials in the state Health Department say.
For Simone Byrne, Cynthia’s mom, the wait is a financial burden, she said, costing the family hundreds of dollars in some months as they pay for activities and services on their own.
“It’s very frustrating,” Simone Byrne said in an interview. “You think you’re going to get all this stuff, and it turns out you’re just on this list.”
Lawmakers are growing impatient.
Rep. Elizabeth Thomson, D-Albuquerque, said it’s important to help children who qualify early – both to provide relief to their families and to save money in the long run by helping them before their condition worsens. Her own son, now 27, has been receiving services through the waiver program since he was a child. He needs round-the-clock care, she said.
“People complain about having to wait for two hours at MVD,” Thomson said. “To think you have to wait 12 or 13 years for service – no one waits that long for anything.”
The waiver program began in 1984 as a way to help people with intellectual and developmental disabilities by serving them in the community rather than in institutions, where some residents endured mistreatment.
It’s known as a waiver because the federal government, for 14 states, has waived the requirement to use a nursing home or other institutional setting to provide services.
Nonetheless, providing the services is expensive, and the state hasn’t been able to pay for services for everyone who’s eligible. Per-client costs are growing, and the percentage of people diagnosed with autism and Down syndrome is climbing, too, legislative analysts say.
To qualify for waiver services, a person must have an intellectual disability, cerebral palsy, autistic disorder or certain other conditions.
The waiting list has grown each of the last three years – from 3,525 people in fiscal 2015 to 4,479 in fiscal 2018, which ended this summer.
There were no new allocations to help people get off the waiting list and start receiving services in fiscal 2018, but the state has resumed taking people off the waiting list since July 1, about 80 altogether, with help from an extra $2 million state appropriation.
People coming off the list this summer have been waiting an average of 12.5 years, according to the Health Department.
About 4,600 people are enrolled in waiver services altogether. It’s one of New Mexico’s largest health and human services programs.
People on the waiting list can receive some services, but they’re not as generous as those available through the waiver program.
Paul Rhien, a spokesman for the Health Department, said the state has a general fund program that can provide “job coaching, day services, residential, respite and behavioral support.”
People on the waiting list can also receive health care through Medicaid, if they qualify.
Therapies offered under the waiver are more extensive and geared toward long-term maintenance and integration into the community.
Lawmakers want to see the waiting list reduced.
In a recent legislative hearing, state Sen. Nancy Rodriguez, D-Santa Fe, called it “mind-boggling” that someone would have to wait a dozen years or more for waiver services.
“These are the most vulnerable people in our state,” she said.
Lawmakers earmarked about $2 million to help shrink the waiting list over the next year, but a much more substantial infusion would be required to dramatically change the picture.
It would cost about $131 million a year to provide the extra services if 4,000 people were removed from the waiting list, according to legislative estimates.
Analysts for the Legislative Finance Committee have recommended slowly ramping up funding over time, with the goal of reducing the waiting list by 25 percent to 50 percent over a five-year period. That would take $33 million to $65 million a year.
They also suggest taking steps to control costs. States with lower waiver costs appear to offer fewer or more limited services than New Mexico, analysts for the LFC say.
“Other states are more cost-effective in delivering services for individuals with developmental disabilities,” LFC analysts said in a report this summer.
The waiver program costs about $360 million a year to operate, with most of the money coming from the federal government and about $110 million in state funds. It’s paid for through the Medicaid program.
Maureen Sanders, a civil-rights attorney who advocates for people with developmental disabilities, said the waiting list may cost New Mexico more in the long run as individuals deteriorate without getting the help they need and are eligible for.
“People should know that their neighbors could have better lives if we got them off the waiting list,” she said.
Thomson, the state legislator, said waiver services helped her son. Something as simple as “respite care,” she said, can be important – bringing in a caregiver to watch the child so the parent can take a nap, go shopping or otherwise take a break.
The long wait for services, she said, is “unconscionable.” Thomson waited about 5½ years, but the list has grown since then.
“You can go through your entire public school career in the time you’re waiting,” Thomson said. “It’s a lifetime for these kids.”
Seeking more help
Sitting on a park bench on a recent summer morning, Cynthia Byrne had mostly short answers to a reporter’s questions.
She said she likes animals, kids and tae kwon do. She has a green belt in the Korean martial art.
“Everybody there is so nice and friendly,” Cynthia Byrne said of Kim’s tae kwon do classes, where she practices. “Everybody always helps everybody else.”
She volunteers in an elementary school classroom. She receives services, her mom said, through Albuquerque Public Schools. Cynthia lives at home and doesn’t drive.
She receives medical care through the family’s health insurance.
But Simone Byrne said her daughter could use help through the DD Waiver program. She envisions someone who could serve as a “job coach” and help Cynthia find and keep a job, or someone to take her to the zoo or mall for fun.
She can still receive state funding to enroll in some programs, but only if state general-fund money is available.
“If they have a slot for a general-fund kid, then she gets to participate,” Byrne said. “If not, then we’re out of luck.”
In general, Byrne said, her daughter needs help continuing to build her independent-living skills. Her parents won’t be around forever to care for her.
“We need someone to help her navigate the world and keep her safe,” Byrne said.