Two years ago, Ernestine Morales spoke to SFR about her fear amid rumors of cuts in the state’s Medicaid-funded Developmental Disabilities Waiver. Morales’ daughter Monique was born with microcephaly, a neurological disorder that has kept her 44-year-old brain at the mental capacity of a 2-year-old. For the past decade, Morales has been taking care of Monique in her Albuquerque home under the DD Waiver for a monthly government stipend.
“If they were to take my monies away, there’s nobody that would work for $3 an hour, 24/7,” Morales told SFR at the time [news, Aug. 25, 2010: “The Next Waiver”].
This year, some of the cuts will finally take effect, as a rewritten DD Waiver is scheduled to phase in this July.
Every five years, the New Mexico Department of Health’s Developmental Disabilities Supports Division reforms the waiver, and 2012 marks another deadline for a rewrite. But DOH has been talking about significantly changing the DD Waiver since 2010, and this time, it’s likely for real.
“We knew there was a cut coming,” Morales, 77, tells SFR. “We just didn’t know it was going to be this severe.”
The DD Waiver allows people like Morales to refrain from sending their family members with disabilities to state institutions. It’s the result of a 25-year lawsuit that stemmed from Walter Stephen Jackson, a developmentally disabled man who, while institutionalized in 1985, drank a cup of oven cleaner and sustained grave injuries [cover story, Feb. 24, 2010: “Jackson’s Legacy”].
The Jackson lawsuit also broke up large mental institutions and replaced them with “community care centers,” where developmentally disabled patients live in smaller, patient-focused groups.
Morales cares for her daughter under the Family Living program, a section of the DD Waiver that allows family members, as long as they are certified, to provide their relatives with in-home care. While Morales is Monique’s main care provider, her husband and oldest daughter are certified “substitute care providers” who can step in and provide care when Morales needs a break.
Under the proposed DD Waiver changes, Morales’ husband won’t be able to receive a stipend for taking care of Monique because he lives in the same house.
Morales’ older daughter will also see her allotted time of paid care—currently 80 hours a month—cut in half.
Fritzi Hardy, who also cares for her developmentally disabled daughter on the DD Waiver, says cutting family living is “easy picking” for the state because family members often already live together and would care for their relatives regardless of whether the state paid them. Hardy says providing care for developmentally disabled people “takes a certain kind of person” who knows how to approach a patient’s unique condition.
“Finding a sub-care provider is very hard,” Hardy tells SFR. “If you have family that can and have done it in the past, why cut off the cycle?”
But DOH officials argue that the cuts to the DD Waiver are necessary to keep the program running. In a Feb. 20 public letter announcing the proposed changes, DDSD Director Cathy Stevenson wrote that the “changes are needed, in part, because the cost to serve individuals in the program has continued to increase, even though people’s support needs are basically the same.” In an email to SFR, DOH spokeswoman Aimee Barabe adds that the amount of federal money matching the state’s investment in Medicaid has dropped by roughly 10 percent since 2010, meaning that the state has to invest more money than before to provide the same level of services.
Another elephant in the room: the growing list of patients waiting to get on the DD Waiver, which exceeds the number served under the program. As of October 2011, 5,571 were on the waiting list, while 3,604 were registered on the DD Waiver. Barabe writes that a major goal of the DD Waiver redesign is to get people off that waiting list.
Morales can relate. She didn’t even hear about the program for a decade after Monique left high school. (The DD Waiver has been around since 1993.)
“As soon as I found out, I started moving mountains to get her on,” Morales says. “I would call Santa Fe practically every other day.”
If the cuts go into effect—DOH is accepting public comments through March 14—Morales says Monique’s family members will be tightening their belts to stay afloat. But the problem, advocates say, is that people on Medicaid already wear tight belts. For the past few years, state Senate President Pro Tempore Tim Jennings, D-Chaves, has unsuccessfully introduced expensive bills to take everyone off the DD Waiver waiting list.
“This is the poorest of the poor,” Jennings tells SFR. “[DOH] really has to be careful with the cuts they make.”