Don Bustos and his 20-year-old son, Emilio, rise early and their days are long. The father dashes off to tend to his fields, and his son, a high school senior, catches the bus to Española Valley High School.
Don’s small farm near Española fills his hours, but Emilio’s future — immediate and distant — occupies his mind. Each moment of Emilio’s day must be meticulously planned to accommodate a disability that can make everyday tasks perilous.
Emilio was born with Down syndrome. His father is pressed to come up with urgent short-range provisions to ensure his health and safety, and is concerned about what will happen to Emilio when he’s gone.
“The challenging parts are that he needs supervision all day, every day,” said Bustos, 59. “I have to coordinate care providers, family members, medical help. I’ve found out I need backups — even triple backups. Something as simple as getting off the school bus at the end of the day, somebody has to be there to pick Emilio up. There’s no question about it. He’s not safe to handle things on his own if nobody’s there.”
Assuring his son’s well-being has put Bustos under financial duress. He estimates that he pays about $1,000 a month out of pocket for part-time care — duties such as picking up Emilio at the bus stop. The specialized medications, therapies and doctors’ visits cost thousands more a year, and sometimes work is lost to the time it takes to run these errands.
The Bustos family is among thousands of New Mexico families that are under great financial and emotional strain from the cost of taking care of loved ones with disabilities.
New Mexico has a program designed to help those with a range of mental and emotional disabilities gain access to therapeutic and medical care, oversight, social enrichment and, in the best cases, independent living.
But for years, the program, known as the Developmental Disability Waiver, has been severely underfunded, leaving families waiting an average of nearly a decade for services. Some families have waited as long as 14 years.
The waiting list for the program’s services, 6,035 deep as of Oct. 1, dwarfs the number of people actually in the program, 4,497, according to the Department of Health. Legislative analysts estimate that five straight years of $25 million infusions — far more than the state can afford — would be necessary to winnow wait times for services to just three years. Limited funding and the state’s unwillingness to prioritize the program have left this segment in New Mexico’s safety net so frayed that some fear it’s broken beyond repair.
Only now, 13 years after he and his wife, now deceased, added Emilio to the waiting list for the program colloquially know as the DD Waiver, is Don Bustos on the doorstep of getting in. Less than two weeks ago, he received a letter that Emilio has been accepted for screening into the program.
“I don’t know if hope is the right word,” Bustos said. “Maybe what I’m feeling right now is more about responsibility. The responsibility to get him into this program is huge, and I feel like I don’t want to fumble the ball on the 1-yard line. This is the final push. I don’t want to miss any opportunities for services that will enhance his quality of life. This is something that could really secure his future.”
Elena Junes of Santa Fe recalls when she stood where Bustos does now. Her autistic son, Shonto, now 15, got a slot in the program three years ago after 11 years on the waiting list.
“There’s almost a point where you resign yourself to the idea that this may never happen. When it did, I didn’t know what to do. It was kind of like winning the lottery,” said Junes, 49. “The waiting list is horrible. For all these years, you move through your day with this in the back of your mind, that you’re never going to get it. You just cobble your life together. The when you do get it, you recobble your life. It literally is life-changing.”
Before Shonto got a place in the program, Junes said everyone in the family, including Shonto, sacrificed in ways they no longer have to. Junes and her husband frequently left work to respond to Shonto’s meltdowns at school. They staggered their work schedules, with Junes’ husband, Delvin, 56, taking a late-night shift to keep his days free so he could tend to Shonto’s unpredictable needs.
Something as seemingly simple as Shonto going to horse-riding therapy after school was a luxury. Now, thanks to assistance provided by the DD Waiver, therapeutic riding and some of Shonto’s other favorite activities that broaden his social experiences and improve his behavior in foreign settings — skiing in winter, kayaking in summer, stocking up at the store for the coffee shop he runs at school — are part of his routine.
“These are things I may have been able to do for him once or twice,” Junes said. “Now, every Saturday he does them. With our daughter needing attention, us holding jobs, the DD Waiver allowed him to do things like a normal teenager. We didn’t have that before. They were things we couldn’t afford, or couldn’t afford time-wise.”
Junes called the community navigator hired with part of Shonto’s DD Waiver budget “the single greatest asset we’ve been able to have” since getting in the program. He takes on duties that Shonto’s parents used to shoulder. He’s in constant contact with Shonto’s caseworker at school, and can adjust to schedule changes when Shonto’s outbursts extend or contract the school day. He takes Shonto to appointments with therapists and acts as a conduit between them and the Junes family.
“It relieves myself and my husband from being on call 24 hours a day,” Junes said.
And the help is permanent. Benefits in the DD Waiver program extend throughout a lifetime. For Junes, that’s a relief.
“Whatever plans we make, whatever things look like when he gets out of school, it’s a parachute, and we’ll always have it,” she said.
But providing services to a population in great need in lifelong increments is expensive and adds to the length of the waiting list. Only about 70 people exit the program to make room for others in a given year.
“Attrition is usually from death, with a few exceptions, such as moving to another state or entering a nursing home,” said Kenny Vigil, a spokesman for the New Mexico Department of Health.
In reality, only money can fill the hole in services that keeps thousands waiting in line. And funding hasn’t kept pace with New Mexico’s demands for the services the DD Waiver program provides.
“People love to look at dollars and cents. The cost of our services is not cheap, but it goes back to one key question: Who are we as a society?” said Ed Kaul, president and chief executive officer of Albuquerque-based provider ARCA. “I think in some ways we have perhaps diverted a little bit away from the fact that taking care of our people who are most vulnerable really is the measure of a great society.”
The Department of Health at its current staffing level struggles to administer the program and process applications for services quickly, and some recipients of the services, particularly those newly receiving them, don’t spend all of the money allotted to them. As a result, some DD Waiver money has been left unspent.
Providers of DD Waiver services have taken rate cuts, and their bottom lines have been affected by new standards for assessing what services clients qualify for, moves mostly made late in Gov. Bill Richardson’s administration. They resulted in 5 percent rate cuts to all providers and an 8 percent cut in the budget for individual services. Another 8 percent cut took effect in 2013.
Even Gov. Susana Martinez’s leaders of the Department of Health hail the austerity measures as a success.
“Program reform carried out over the past several years has helped maximize the use of existing funding and made the program more efficient,” said Vigil of the Department of Health.
But providers told lawmakers during a legislative hearing last fall that many of them have scaled back services and some have even gone out of business as a result of the shake-up, while others may be within just a couple of years of facing the same fate.
“Some of the providers out there are barely hanging on by their fingernails,” said Mike Kivitz, president of Adelante Development Center in Albuquerque, a nonprofit that’s among the state’s largest providers of DD Waiver services.
Concerns that the program was bloated spurred sweeping changes to the way it is funded. New Mexico’s average of more than $70,000 per person spent on services for those in the program was among the highest in the nation. Kivitz said it’s difficult to draw strict comparisons between New Mexico and other states. New Mexico is unique in that it shut down its only large institutional homes for people with developmental disabilities, instead allowing recipients of DD Waiver services to live at home or in group settings primarily of four people or fewer — far smaller than the homes of up to 16 residents in most states. And a court order from the same lawsuit that ultimately led to the closure of the institutions keeps residential settings in New Mexico small.
In some ways, the funding overhaul for providers has pitted two priorities against each other in a fight for limited resources, providers that belong to the Association of Developmental Disability Service Providers said in their presentation to lawmakers last fall. Instead of focusing on expanding their operations to accommodate more clients — a necessary step for any significant progress reducing the waiting list — providers trained their attention on survival.
The practical result is that families on the waiting list will keep waiting. The budget currently being debated in the Legislature would leave funding for the DD Waiver program essentially at its current level, but the Department of Health hopes up to 230 new slots can be created during the fiscal year that begins July 1, thanks to a boost in federal money and a proposal to allow unspent funds in the program to carry over from one year to the next. During the past few years, the program with a base budget of about $100 million from federal and state sources has returned between $2 million and $7 million to the general fund.
Sen. William Soules, D-Las Cruces, gave up quickly on ambitious legislation he was carrying this legislative session that aimed to cut the waiting list to a maximum of three years. Legislative analysts determined it would cost the state $25 million a year for each of the next five years to accomplish the feat.
“We can’t just dump in $125 million to get the waiting list down to 500 or 1,000 because we don’t have it, and the provider network isn’t there to serve all the people who need these services, even if we did,” Soules said.
But he’s still frustrated that the waiting list is growing while availability of services is not.
“At this rate, it’ll be over 50 years before we deal with the backlog,” Soules said. “Adding 100 new people doesn’t put a dent in the 6,000 that are on the waiting list, and nobody seems to be overly concerned.”
Soules is carrying another proposal, Senate Bill 216, that would require comprehensive annual reporting to the Legislature on progress toward reducing the waiting list. The Senate passed the bill, and now it moves to the House for consideration. But the Department of Health questions whether the reporting requirement would have any practical effect on the length of the waiting list.
“Reporting will not result in reductions to the [DD Waiver] waiting list or to the time individuals wait for the program,” according to a legislative analysis for SB 216 based on Department of Health responses.
Judy Greenfeld, 78, of Albuquerque, said she sympathizes with the families waiting for DD Waiver services, even though her family’s wait to get in was relatively brief.
“I know the list is long, and those that are waiting think they’ll never get to the top, but don’t give up hope,” she said. “It’s so important for our folks to get the therapies they need, to have the help they require.”
Her autistic son, Ricky, now 57, has been in the program since soon after its inception more than 20 years ago. Today, he holds a job as a mail clerk two days a week, helps with Meals on Wheels, lives in a three-person group home and enjoys outings to the bowling alley.
“We know that our folks can’t live alone, and they can’t live on their own. A lot of them are going to need 24-hour care, and it’s never going to end,” Greenfeld said. “So there’s a real satisfaction in knowing and a comfort in knowing that when I’m gone, there will be somebody there to take care of him.”
When Ricky was a boy, his autism stumped a generation of doctors who struggled to fully understand the condition. Greenfeld said she used to shudder when she imagined what her son’s future held. But the condition has grabbed the attention of the medical field more recently, and it is better understood. Now, Greenfeld is very satisfied with her son’s outlook, and so is Ricky.
“I have a good life,” he said. “I know that.”
Contact Patrick Malone at 986-3017 or email@example.com. Follow him on Twitter @pmalonenm.