Thousands of New Mexicans in need of disability services are off a waitlist, but are providers ready?

Home-based services for people with intellectual or developmental disabilities help them participate as active community members while receiving therapy, seeking jobs and maintaining daily routines.

Thanks to an infusion of federal COVID-19 relief money, 4,600 New Mexicans with developmental disabilities, some of whom languished 13 years or longer on a lengthy waiting list, are now being offered services.

But what happens when that money runs out is not clear, and a parallel challenge persists as providers struggle to serve those clients at outdated reimbursement rates.

Two providers have stopped offering home-based services altogether: Solana Care in Albuquerque has shut its doors, and Tresco — a nonprofit based in Las Cruces — announced in March it was withdrawing from the state's development disability waiver program because it was financially untenable.

"Funding for this program has been inadequate for decades," Tresco CEO Chris Boston said at the time, complaining that employees serving individuals in need under difficult and sometimes dangerous circumstances were being paid less than $12 per hour on average.

He said Tresco had been subsidizing its own services from other revenues by more than $12 million over 10 years. During this fiscal year alone, between July and March he reported Tresco has spent $360,000 at the expense of other services.

It is referred to as a "waiver" program because eligible recipients receive a waiver from the Centers for Medicare and Medicaid Services allowing them to receive services at home instead of an institutional setting, reimbursed with federal money. The state's general fund provides matching dollars.

Progress on 13-plus-year waiting list

Jason Cornwell, who has headed the state's Developmental Disabilities Supports Division since 2019, said keeping up with the approximately 375 new individuals who qualify for services each year requires $7.5 million in state appropriations. Short of that, he said, "I cannot tread water. My list of people waiting will grow."

As state funding fell short year after year, the wait list grew. In March, Gov. Michelle Lujan Grisham signed the 2023 budget which included $18 million to move everyone off the waitlist and increase rates paid to providers.

Thanks to American Rescue Plan Act funds, Cornwell said he has enough money to fund the program through part of the 2025 fiscal year, but said he was concerned about lawmakers' resolve to continue appropriating sufficient money.

In the meantime, Cornwell reported allocation letters offering services to those waiting have ramped up: From 149 letters sent last July to 520 in November, 685 in January, and 709 in April. Several hundred people were in the process that follows an allocation letter, confirming their eligibility for Medicaid through income and clinical determinations, which he said can take six months.

The health department said it expected everyone on the list to transition into services "within the year;" but Cornwell said if lawmakers don't find money for the program in a subsequent session, the list will grow again.

Can providers serve 4,600 more?

At Tresco, Boston said in a new interview that 88 employees were deciding whether to leave for other providers once Tresco concludes its waiver program services on June 30. That's to the benefit of clients who would continue to receive services from people they know and trust.

Others may stay on to work with Tresco's other programs, but Boston said, "I think most of them are going to want to follow their participants because they're so dedicated to the work that they do."

Providers in the state program must accept clients who are allocated services if they are chosen, though they can apply for a temporary moratorium on new clients if they are overwhelmed.

He said providers cannot decline a client if unable to serve an individual's particular needs, nor can they negotiate rates. Instead, he said the state tells the company, in effect, "This is how much we'll give you to serve this person. Make it work."

Yet because of low reimbursement rates, Boston said the nonprofit has struggled to offer reasonable pay for workers who serve clients that may present severe behavioral issues or extensive needs, along with complex regulations and documentation requirements, tight deadlines and performance audits.

Boston said those pressures could now multiply as the state moves quickly to move 4,600 more individuals into services; and it was a factor in Tresco's decision to end its contract with the state health department.

"I believe there were 500-and-some individuals in Doña Ana County that were on that list," Boston said. "Even if we were asked by 10 percent of those individuals to be served … there's no way I could find employees to serve them. We don't have enough people to support the 66 or so we have in services now."

Many of the 215 providers in the program statewide have filed for a moratorium, constraining supply of some services. Out of 30 occupational therapy providers, 24 are on moratorium; as are 28 out of 32 physical therapy providers. Behavioral support consultants and supported living providers have filed as well.

'There are so many rules'

When Tresco's board of directors made the decision to pull out of DD waiver services, the company had an audit problem.

One day before its announcement, Tresco received a denial of a correction plan it was required to submit after a 2021 Quality Management Bureau survey detailed numerous findings involving individual plans, completed activities or documentation that did not meet requirements.

Those findings consisted of activities that were not done or not documented at the frequency required by clients' plans; tardy "general events reports" documenting medications, injuries, law enforcement calls and other events; and other findings related to documentation.

Analisa Martinez, Tresco's community support services director argued the 2021 surveys included frequency of outside activities but did not account for limitations from the COVID-19 pandemic.

Cornwell acknowledged a single client could have as many as 10 or 12 individual plans related to medical conditions, behavioral issues and other needs. On top of that, a single staffer might serve a household with multiple clients, keeping track of dozens of plans within the household while meeting various 48-hour reporting deadlines.

"I couldn't," Cornwell, himself a former certified nursing assistant, admitted. "I'd have to walk around with the book."

Because Tresco had repeat deficiencies, it was required to submit a correction plan for approval by a state internal review committee. On March 2, Tresco received notice from the health department that its proposed correction plan did not sufficiently document the steps it would take to retrain staff and maintain records.

"They were all about deadlines," Boston said. "There was no harm done to any individual. There was no claim that harm was done. Nobody was put in jeopardy. No one's health and safety was compromised."

Moreover, additional training, service coordination and other expenses required for compliance are not reimbursable expenses.

"The role of the audit is very important in that we must have outside entities quality-checking the work that we do, without a doubt," Boston said, "but we also have to put things into perspective."

Cornwell agreed improvements could be made to streamline the documentation required of providers, saying the burdens can lead to "performance issues" that don't necessarily compromise clients' care.

"All that stuff has been layered upon layer upon layer in our rules and in our standards, as a result of the litigation to try to keep bad things from happening," he said. "How can you perform it to a high level when there are so many rules?"

Paying 2017 money for 2023 work

Cornwell added that the provider network has been "perennially underfunded for a very long time," which means providers have a difficult time recruiting and retaining talent.

"A nurse can go anywhere these days," he said. "We have to have competitive rates, we have to be an attractive employer. … The number one predictor of quality of life for an individual with a disability is a long-term staff member who knows them."

Certain kinds of services can also be hard to locate in more remote parts of the state, such as speech therapy, occupational or physical therapy, to say nothing of supported living staff.

New Mexico's Developmental Disabilities Act requires the health department to produce a rate study every two years to keep reimbursements up to date, but Cornwell said that hasn't happened. The most recent rate studies were in 2000 and 2012, he said, and then in 2019 after he assumed leadership.

That study relied on data from 2017 and 2018, and the final report preceded the COVID-19 pandemic and its impacts on the labor market and economy.

Cornwell said that study showed he needed $15.2 million in state dollars to support providers at the level recommended in the rate study. Lawmakers provided it, but over two budget years, while he worked on raising federal reimbursements.

He confirmed that some services will be reimbursed at 2017 rates and some even at 2012 rates.

This, Boston said, is why Tresco can't offer much better than minimum wage and stay in business: "We're expecting people to start at $11.50 here, where they can get hit, spat at, kicked, have things thrown at them, be yelled at and called names."

At the New Mexico chapter of The Arc, a nonprofit advocating for people with intellectual and developmental disabilities, public policy officer Chris Leroi said the Build Back Better Act, a large domestic spending bill championed by President Joe Biden but defeated in the U.S. Senate, would have included more funding for home- and community-based services.

In the New Mexico Legislature, a bill to increase funding for providers died in committee this year, but Leroi suggested it could be brought back for next year's 60-day session.

"It's extremely frustrating," he said.

Meanwhile, Cornwell is already planning a 2023 rate study to inform budget recommendations for 2025.

He referred to federal COVID dollars as "a tourniquet" for providers, adding: "We've been bleeding them out. We've got to resource them."

Algernon D'Ammassa can be reached at 575-541-5451, adammassa@lcsun-news.com or @AlgernonWrites on Twitter.

This article originally appeared on Las Cruces Sun-News: Funding, heavy workloads hang over New Mexico disability waiver program