Major changes loom for the developmentally disabled
Jenna Montoya is an active 25-year-old who likes going to the movies, the mall and the zoo. She was born with cerebral palsy and has relied on the developmental disability waiver—a state Medicaid program—to improve her quality of life. She gets services like physical therapy and day habilitation. Even after she was placed in one of the state's most high-needs categories, her mom is concerned that alterations to the waiver program on Oct. 1 will mean big cuts to the therapy her daughter receives.
“If Jenna didn’t get the movement she gets in physical therapy, because of the spasticity of cerebral palsy, her joints would atrophy,” June Montoya says. Her daughter also had issues with drooling until she underwent extensive swallow and speech therapy. “None of us can imagine where she would be if she hadn’t had therapies because she’s been getting them since she was 8 years old,” she says, “and just the maintenance is important.”
Right now Jenna Montoya gets an hour of physical therapy every week, which her parents agree has improved her strength, endurance and digestion. As far as the Montoyas have been able to tell, coming changes could mean that she’d have to scale back all therapy to a total of 32 hours per year.
It’s been hard for them to see some of the biggest cuts come out of the family living program, where recipients are able to stay at home and get care from relatives. That’s how Jenna Montoya remains bonded to her family and their social circle, and how she stays involved in activities at their church, June Montoya says.
Her daughter wouldn’t get individualized attention in a group home with up to five other people, she adds. Family living costs the state less money than so-called “supported living” in institutions or group homes.
She also says she doesn’t understand why New Mexico hired an out-of-state consulting agency to decide where cuts should be made instead of talking to families and other direct care providers.
“We all agree that there can be use and abuse of services, but they never ask for family input. We would have been more than willing to sit down and just talk about where we’re willing to give.”
The cuts feel really unfair to families, says Montoya. “I think they make them there because they know we’re going to keep giving care no matter what.”
“We would have been more than willing to sit down and just talk about where we’re willing to give.”
Making the system more fair is the thrust of the mandate from the Department of Health.
“The DD waiver serves around 3,600 individuals, and the cost per person remains very high—in excess of $73,000 per person per year on average,” writes Aimee Barabe, spokesperson for the Department of Health, via email interview. About 5,700 are on a waiting list, she adds.
Folks can wait a decade or more for waiver services, and Barabe says her department receives between 75 and 100 applications every month. With the rising cost of health care, the state contends that the system simply isn’t sustainable—or equitable. “People on the waiting list have the same needs as those in the program,” Barabe says.
Providing more services while simultaneously saving money is not easy. Folks will get exactly what they need—no more, no less, says Barabe.
To that end, the state decided to adopt a system for determining what kind and degree of help waiver recipients need. The Supports Intensity Scale, or SIS, is the first test of its kind. It’s administered by certified evaluators. The state is confident it will prove accurate, and help tailor budgets and service packages.
The problem with the “no more, no less” rationale, according to advocates, is it implies people have been overusing services. Test results show the opposite, says James Jackson, executive director of Disability Rights New Mexico. “From what we hear from the Department of Health, the results of these assessments are confirming that people are getting an appropriate level of services.”
And yet advocates worry that when the SIS test is wrong, there will be serious repercussions.
Doris Husted is the director for public policy at Arc of New Mexico, an organization that works for people with disabilities and provides direct support services. She says possible shortcomings of the SIS have given her pause.
“Here at the Arc we’re guardians for about 185 people. We’ve had some assessments come back where we know that person can’t live independently, and there are very clear reasons, but the SIS scores ... reflected independent living.” Husted says she fears some who have been receiving around-the-clock care—and who still need that level of help—could be forced to scale back simply because of their SIS scores.
Barabe at the Department of Health says the SIS has been clinically proven to be more accurate than not, and in the first year of implementation, people with concerns about results don’t have to file a formal appeal to get retested.
Those with 24-hour care will have a year to plan a transition if the test recommends a decrease, Barabe says. “There are a variety of services in the new waiver to provide support to people in their homes." In the “rare case” that someone’s needs are so unique or complex that they still don’t fit into the tiered system, adds Barabe, the state is open to making exceptions and authorizing special budgets and service packages.
“People on the waiting list have the same needs as those in the program.”
Aimee Barabe, spokesperson for the Department of Health
June Montoya says she and other families have asked that doctors, not Department of Health officials, will be the ones to authorize such exceptions.
Controversy over the waiver doesn’t end there. Organizations that aid the developmentally disabled—along with professionals in the speech and language, occupational, and physical therapy fields—have lodged their own complaints. Mike Kivitz, president and CEO of Adelante Development Center, and Jim Copeland, the executive director of Alta Mira Specialized Family Services, both say they’re worried about the fiscal sustainability of their organizations.
“If the changes go through,” says Kivitz, “they’d be devastating.”
“If the changes go through, they’d be devastating.”
Mike Kivitz, president and CEO of Adelante Development Center
Copeland says he’s fervently hoping state officials are still open to negotiation. His organization is looking at 10 percent less revenue without any reductions in workload.
Laurie Ross-Brennan is a speech-language pathologist and owner of a small business that employs therapists in that field. She says those who work with disabled folks have been seeing steady cuts to their pay since 2007. “It’s not sustainable. We’re already seeing numerous speech pathologists, occupational therapists and physical therapists who are just leaving because they can’t afford to care for their families on the proposed cuts.”
Adding to the pressure is the state’s growing emphasis on a more indirect model of providing care. Jackson of Disability Rights New Mexico explains this would “have the professional therapist design a program, get it started and then turn it over to direct care staff or other people to actually implement.”
Ross-Brennan says the state is, in effect, asking her to teach direct service providers with minimal education how to do her job.
“I have a master’s degree in science. We work hard to get state and national certification that comes from years of specialized training so that when I’m looking at you and realizing there’s some asymmetry in your face because your vocal folds are drooping, I can do this new oral-motor thing to help.” It’s already hard to get follow-up care from direct service staff members, says Ross-Brennan, because they’re not paid well and have high turnover rates. “I’ll try to train staff to do it. Are they always going to? No.”
The state says the consultation plan isn’t new. “Therapists check in periodically to ensure that the strategies are working as intended, provide reinforcement of the strategies, answer questions, etc.,” says Barabe. Once the therapist sees that the strategies are working and that the support staff is consistent, the individual would be discharged. This means the therapist would no longer be in the picture unless a new need emerges.
Ross-Brennan says this approach is out-of-touch. “We’re not rehabilitating people to the point where they’re going to get so much better on their own that they don’t need services any more. Their needs don’t fade out.”
As a mother, Montoya says she understands the frustration of waiting families who are anxious to get their loved ones waiver services. It's for that very reason that she takes issue with the state’s approach. “You can dilute something to the point where it’s meaningless.”