ALBUQUERQUE, N.M. — They gathered, angry and afraid and wanting to be heard finally, even if for now it was only among themselves, about changes coming to the funding that helps them care for their developmentally disabled children.
Most have children so fragile and so compromised they might not have made it to adulthood without the services paid for through the state’s Medicaid-funded Developmental Disabilities Waiver Program, more commonly referred to as the DD Waiver.
Others have children still on the waiting list, which stretches a decade long.
I am in the latter group. My two special needs sons, ages 14 and 15, were placed on the waiting list in February 2005. Last I checked, they’re still not close to the top.
Nearly all of the dozen or so parents, providers and children who got together last week raised their hands when I asked who had attended one of the public meetings held by the state Department of Health’s Developmental Disabilities Supports Division, seeking comment on proposed changes to the program.
Nearly all of them had tried to provide feedback through the division’s cumbersome, and often uncooperative, website.
One mother had even pushed her way into having a one-on-one meeting with division director Cathy Stevenson to discuss the matter.
All of them said they did not believe the state had heard a single word.
“I’m tired,” said an exasperated Camie Maloy, mother of a severely disabled 22-year-old daughter and the organizer of the meeting at her West Side home. “I have tried again and again to get them to listen, but they don’t. We need to be loud. We need to have some voice.”
Maloy’s gathering came days shy of the March 30 deadline for public comment and months before the changes and the cuts take effect July 1.
It came after years of frustration.
She had been troubled with how the changes – which include a new needs assessment and allocation system and a slashing of the budget for care such as therapy and day programs – were being rolled out despite her protests.
She had been upset with the way the public meetings had been run, the one in Albuquerque last month held on a workday in a room so small that some of the people and the wheelchairs that bore their children had to be turned away.
She was angered that the state had done little to publicize these meetings in advance other than posting notice on its website – which not all of the families of the more than 9,100 individuals either being serviced by the DD Waiver or on the waiting list were aware of.
She knew she was not alone.
Others who had attended the public meetings, or tried to, said they felt marginalized by the way division officials treated their concerns. They decried the online feedback form that left room for no more than a word or two.
“They didn’t want to hear our stories,” one mom said. “They wanted us to listen and be quiet. They wanted to do the least of what they were required to do.”
Families of special needs children are invited to next meeting of new group concerned about DD Waiver program, 6-9 p.m. April 13, Manzano Mesa Multigenerational Center, 501 Elizabeth NE, 275-8731. Reach Camie Maloy through Facebook on Unified Families page.
For more on DD Waiver revisions, see Developmental Disabilities Supports Division web site at www.nmhealth.org/DDSD.
Health Department officials argue they have been working with parents and other stakeholders since 2009, obtaining feedback from more than 450 people during town hall meetings held over the course of two months that year.
What they don’t mention is that they quietly lopped off $9 million in state money and $27 million in federal matching funds four months later without any public comment on that matter until advocates and families complained.
Health Department officials also say changes in the DD Waiver program are necessary to keep up with the increasing demands and shrinking budgets. They assure us the changes will improve the program for all.
“These changes will promote individual independence and reduce reliance on paid support,” Stevenson points out in her letter of explanation. “The goal is that individuals served will get the waiver services they need to live successfully in the community: no more, no less.”
Translation: Less services will be paid for.
The parents argue that the new structure of service packages takes away their freedom to move around the money from what their child doesn’t need to what their child does.
“It’s like the state is saying we don’t know what is best for our own kids,” said one mother whose 44-year-old son is disabled and mostly nonverbal. “It’s demeaning.”
They are worried about the exodus of therapists who can no longer support a practice with the cuts already enacted under the program.
They are angry that the changes will compromise the already tenuous conditions of their children, many who require round-the-clock care and therapeutic services just to keep from regressing.
“When you withdraw support, people will die,” said Joanna Rubi, whose disabled teenage daughter has been on the DD Waiver waiting list for 10 years. “And when people die, the state saves money.”
After the meeting, the parents and providers agreed to meet again, to organize, to expand, to unite with one strong front, one voice so that somebody in Santa Fe finally hears them, loud and clear.
I hope Santa Fe listens.
UpFront is a daily front-page news and opinion column. Comment directly to Joline at 823-3603, email@example.com or follow her on Twitter @jolinegkg. Go to www.abqjournal.com/letters/new to submit a letter to the editor. — This article appeared on page A1 of the Albuquerque Journal