Each week, Rachel Hardy spends 24 hours out in the community, sorting clothes at Goodwill and selling her paintings and drawings at VSA arts of New Mexico. Hardy, who suffers from multiple seizures each day, is compensated through Medicaid. The idea is to give her enough exposure to the outside world to live a more normal life.

All this could change next year, when drastic revisions to the state's Medicaid-funded Developmental Disabilities Waiver begin to take effect. For Rachel, the implications are especially serious. Her mother, Fritzi, currently earns $2,100 a month—again, through Medicaid—to care for Rachel on a daily basis. Under changes recommended by the New Mexico Department of Health, Fritzi's payments will be dramatically cut by 2014.

"Basically, they're downsizing," Fritzi, an advocate for the DD waiver, tells SFR. "On one hand, [the DOH's Developmental Disabilities Supports Division] wants people to have a normal life. On another hand, they don't have normal people."

After more than two years of tedious preparation, one of New Mexico's most unique—and most emotionally charged—public health programs is finally following through with planned cuts that have worried patients and caregivers for just as long.

The DD waiver allows developmentally disabled patients to bypass state-run mental institutions and receive care at home—in some cases, from family members like Fritzi. It's funded through Medicaid, meaning New Mexico spends $1 for every $3 in federal funding it receives.

Although New Mexico's DD waiver must be rewritten every five years as a matter of course, the high cost and lengthy wait times associated with the current waiver have prompted sweeping changes this time around. The new waiver goes into effect in January, with most major changes happening incrementally. (Changes to Rachel's care, for instance, are currently scheduled to start taking effect next April.)

One of the larger changes involves the Supports Intensity Scale, a new evaluation system that ranks developmentally disabled people according to the amount of care and support they need. Rachel's evaluation ranked her needs as an 'A' on an A-H scale—meaning she needs the least assistance.

"It says she can live alone," Fritzi says.

The suggestion doesn't seem viable to Fritzi, who recalls an incident when Rachel burned her arm in the shower so severely that she needed a bone graft.

DDSD head Cathy Stevenson announced the changes in February, writing that while the cost of the DD waiver was increasing rapidly, patients' needs remained the same.

"The goal is that individuals served will get the waiver services they need to live successfully in the community: no more, no less," Stevenson wrote.

The new waiver anchors this goal by classifying patients under SIS, then tailoring budgets and plans to fit their rankings. The SIS interviews began last December and were conducted by out-of-state experts from the federal Administration on Intellectual and Developmental Disabilities.

DOH spokesman Kenny Vigil writes in an email to SFR that patients with As and Bs are eligible to receive "Customized Home Support," which "provides intermittent support," rather than the full-time, family-living care Fritzi is paid to provide under the current waiver. The patient, her guardian, her case manager and all of her service providers have until 2014 to figure out what services to buy with the patient's customized "base budget."

"People who need less support have a lower base budget," Vigil explains. "People who need more support have more funding in the base budget."

In some cases, the change may be drastic. For Fritzi, it may mean getting a job at a call center so the family can afford basic expenses. Joan Curtiss, a senior advocate with Disability Rights New Mexico, says care providers like Fritzi often rely on DD waiver subsidies for a living.

"Many quit their jobs so they could live at home for their loved ones," she tells SFR.

Going back to the workforce may not be easy, especially given the recession.

"I think what they're hoping is many of these people are family living providers, and they'll just continue to care for their families," Curtiss says.

But DDSD is also working to fill gaps in the program. Last year, it requested $2.7 million in additional funding, which transferred 123 people from the waiting list to the waiver. This year, the agency is asking for another $5 million to do the same.

Vigil adds that changes in the new waiver will allow 650 people to move from the waiting list to the waiver over the next four years (6,000 applicants are currently on the waiting list, with an average waiting period of 11 years). He estimates it will also drop the cost per person by around $8,500.

Standards of care won't be lower, either. Under the new waiver, Rachel, who's been on the DD waiver for 14 years, will still be required to complete 30 hours of planned community activities each week—but she will only receive Medicaid compensation for 10-12 work hours. Under that scenario, Fritzi estimates her DD waiver benefits will drop to $400-$500 a month.

She adds that Rachel working independently is unrealistic. At her current jobs, staff are trained to respond to her seizures. If they weren't, they'd be calling 911 each time, repeatedly landing her in the emergency room for costly hospital care.

"Money is still coming out, just from another pocket," Fritzi says. "It's going to cost society more money, but [DDSD] doesn't care because they would rather have others pay their pot of money."

Currently, DD waiver patients who are unhappy with their new classifications can ask to be reassessed. As of Oct. 31, approximately 500 of the DD waiver's roughly 3,800 patients had requested them, according to Vigil.
Rachel's SIS reassessment is scheduled for January. If the diagnosis is similar to the first one, Fritzi says she'll request a hearing to challenge it.

Fritzi anticipates many bumps in the road ahead, including lawsuits. But regardless of what happens, large cuts to public care for thousands of developmentally disabled New Mexicans will soon be a reality.

"All of us are only imagining what it would be like," Curtiss says. "We're worried some of these people's health and safety is in jeopardy."

DD Waiver: By the Numbers

3,800: number of patients currently on the Medicaid Developmental Disability Waiver in New Mexico

6,000: number of people currently on the waiting list to receive DD waiver benefits

11 years: average time people spend on the DD waiver waiting list

650: estimated number of people who will move from the waiting list to the waiver by 2016, under changes to DD waiver benefits

$77,457: current cost per DD waiver patient

$68,883: estimated cost, per patient, after DD waiver changes take effect