By Gina Macris

Without a personal care assistant, Annette Bourbonniere of Newport needs up to five hours each day to get herself dressed in the morning.

For the past year, she hasn’t been able to find regular help for a position that pays $15 an hour, the Rhode Island-approved Medicaid rate for the services she needs, unchanged for the last 18 years.

Not only is it impossible for her to engage in productive activity, Bourbonniere says, but “I worry every day how I am going to survive.”

Bourbonniere, seated in a high-backed power chair, was one of hundreds of people from all walks of life who converged on the Senate Finance Committee April 28 to hammer home the message that the state’s Medicaid program is broken.

The witnesses testified for a cluster of bills which, taken together, would stabilize Medicaid-funded services with one-time rate increases and set up a rate review process every two years, with a 24-member committee drawn from the community advising the Executive Office of Health and Human Services (EOHHS). There is no estimate of the overall cost of the bills.

In a letter to the Senate Finance Committee, the Director of Administration, James E. Thorsen, and the acting Secretary of Health and Human Services, Ana P. Novais, indicated that the prospects for immediate changes appear gloomy.

Thorsen and Novais said there are 74,000 separate Medicaid rates in the state’s program, all of which cannot be revised in one year as the legislation requires. A rate review “of this magnitude” would take at least five years, they said.

They said the bill establishing a 24-member advisory committee for Medicaid rate review instead might be seen as “establishing policy and rate setting”, rather than advising EOHHS, the agency with the legal authority to set rates.

There is also an appearance of a conflict of interest in that the potential make-up of the committee includes members who would be recommending rates for other members of the same group, Thorsen said.

Support for Medicaid reform remains uncertain in the House, where Rep. Julie Casimiro, D-North Kingstown, has organized companion legislation adding up to a Medicaid overhaul..

At the outset of the hearing, State Sen. Ryan Pearson, D-Cumberland, the chairman of the Senate Finance Committee, said the Senate has already made Medicaid reform one of its top priorities in the current session.

The legislation was spearheaded by Sen. Louis DiPalma, D-Middletown, first vice president of the Senate Finance Committee, who received repeated praise from the speakers for his relentless focus on equity issues in the human services.

Dozens of witnesses told the committee that the reimbursement rates to community-based health and social service programs fall so far below costs that:

Access is shrinking to out-patient services that can prevent costly hospitalizations and even life-threatening situations.
Caregivers ranging from doctors and dentists to nursing assistants and personal assistants to those with disabilities are either leaving their fields or leaving the state.
Hospitals are left to deal with more patients who have nowhere else to go, while they lean on private insurers for more money to fill the gap. In the end, those who buy private insurance must foot the bill for escalating premiums.

According to the testimony:

Four hundred infants with special needs are waiting for early intervention services to which they are legally entitled.
Nearly six hundred elderly are waiting for home care services that will prevent them from going into nursing homes.
Almost 200 children and youth are waiting for psychiatric care, sometimes in hospital emergency rooms.

At the hearing, Sherrica Randle said her 13-year-old daughter has been hospitalized three times in the last six months for behavioral issues. During the most recent episode, her daughter spent nearly two weeks in the emergency room of Newport Hospital for lack of a pediatric psychiatric bed at Bradley Hospital, Randle said.

Elsewhere, a teenage girl who had made a “serious” suicide attempt nevertheless had to wait four months for mental health services, according to Alexandra Hunt, clinical director of Tides Family Services.

The COVID-19 pandemic exacerbated the labor shortage in front-line human services but many agencies have struggled for years to pay enough money to prevent workers from leaving the field, the witnesses said. Jamie Lehane, President and CEO of Newport Mental Health, said he had to sell a building a few years ago to continue making payroll and avoid a shut-down.

Like other community social service and home care agencies, providers of services for adults with developmental disabilities can’t get qualified personnel to work for Medicaid-approved rates, starting at $15 an hour.

These providers compete with retail and fast food chains, which pay more for jobs that are less demanding, said Casey Gartland, representing the Community Provider Network of Rhode Island, a trade association.

Unlike other sectors of the Medicaid program, services for adults with developmental disabilities are subject federal oversight because of a 2014 civil rights consent decree and several court orders, one of which requires the state to raise wages to $20 an hour by 2024.

The proposed budget of Governor Dan McKee would raise the wages of front line developmental disability workers to $18 an hour as an intermediate step on July 1.

But the most recent data about the workforce and inflation has prompted DiPalma to sponsor legislation that would raise the pay of developmental disability workers to $21 an hour on July 1. Rep. Evan Shanley, D-Warwick, has filed a companion bill in the House.

The Rhode Island Federation of Teachers and Health Professionals held a press conference in favor of that proposal just before the start of the hearing on Medicaid reform.

Doctors, dentists, and hospital executives testified in person and in writing that the state’s Medicaid program has a ripple effect on the healthcare of all Rhode Islanders.

The case of Women and Infants Hospital, where 80 percent of Rhode Island mothers give birth, illustrates that point.

Shannon Sullivan, President and CEO of Women and Infants, said it is the ninth largest stand-alone maternity hospital in the United States.

Nearly forty-five percent of its revenue comes from Medicaid Managed Care, which pays half of the Massachusetts managed care rate for obstetrical births, she said.

Simple math shows that the situation is unsustainable, she said. “This is not an issue that will go away, and it is not an issue that we have much time on,” Sullivan said.

Without Women and Infants, women experiencing difficulties in their pregnancies would have to go to Boston or New Haven to receive the same level of care, she said.

Gail Robbins, senior vice president of Care New England, the parent company of Women and Infants, said that because of low Medicaid rates, hospitals must put pressure on private insurers, whose rates are 200 to 300 percent more than Medicaid.

“It’s not a healthy bottom line,” Robbins said.

DiPalma said hospitals are not awash in cash. They absorb considerable costs in uncompensated care of uninsured patients, and must pay hefty licensing fees to the state, he said.

The Department of Administration and EOHHS support the programs funded by Medicaid and recognize the need for regular rate reviews, Thorsen and Novais said.

But “any changes to the rate setting process should be carefully measured and balanced to avoid significant negative funding impacts of other important programs such as education, public safety, and natural resources,” they said in their letter.he said.In their letter,

The state already spends 40 percent of its general revenue on human servicesm the two administrators said. By comparison, Massachusetts pays considerably more on the human services, up to 56 percent of its budget, according to DiPalma.

Others at the hearing saw the situation as a question of values.

Bourbonniere, a consultant on accessibility and inclusion, said she was dismayed when she attended an online meeting with EOHHS officials last fall and they said at the outset, with apparent pride, that Rhode Island has a lower Medicaid expenditure per person enrolled than the median in the United States.

For her and others going without services, “this was crushing,” she said in a letter to the committee.

Paying personal care assistants and other essential workers a living wage contributes to the state’s economy in the goods, services, and taxes they pay and the businesses they support, Bourbonniere said.

These essential workers also enable people with disabilities to earn a living. “Isn’t that better than the current investment in maintaining poverty,” she said.

The bills heard April 28 are:

S2200- provides a rate-setting review every two years for all medical and human service programs licensed by the state or having a contract with the state, including those funded by the federal-state Medicaid program.
S2306 - provides one-time increases to base rates in the Medicaid program for home care services
s2648 - funds pass-through wage increases to those who work in long-term care in the community with $17.7 million in the established “Perry-Sullivan” law, rather than allowing the governor to use one-time funding from the American Rescue Plan in the next budget. Proponents say the state could be penalized by the federal government from using ARPA to replace or “supplant” existing funds.
S2311 - provides for a 24-member advisory committee to EEOHS for the rate-setting process
S2546 - provides for one-time Medicaid rate increases to early intervention and outreach programs for young children with special needs.
S2588 - provides one-time increases to Medicaid rates for dental services and includes chiropractic care for the first time in the Medicad program.
S2598 - increases the daily reimbursement rate to nursing homes by 20 percent for single-occupancy rooms with private bathrooms.
S2884 - Provides a substantial increase to the Medicaid managed care rate for hospital births
S2597 - eliminates the need for annual eligibility review for the eligible for the federal Katie Beckett program for children with disabilities, as long as a doctor says their condition is unlikely to change. the bill also allows families of eligible children to request additional service hours.
All photos from Capitol TV

L TO R, Rep. Julie Casimiro, Sen. Louis DiPalma, Christina Battista. Audience Applauds Battista While DiPalma Hands Battista’s Notes to Battista’s Personal Care Assistant, Center.

By Gina Macris

Christina Battista, a supported employment coordinator for Skills For Rhode Island’s Future, says she never would have been able to earn a master’s degree or hold a job if it weren’t for a personal care assistant.

“Someone is literally my hands,” says Battista, who has a physical disability. Her personal care assistant helps her shower, cook, do laundry, take her shopping, help her meet up with friends, “and so much more.”

“Being able to live, rather than just exist, means more to me than I can express in words,” she said.

Likewise, Patricia Sylvia says she wouldn’t have been able to live happily at home for three and a half years after her stroke if it hadn’t been for a certified nursing assistant who helped her with everything from bathing to laundry to cleaning.

But Sylvia’s caregiver died last August. As a result, she’s lost 15 pounds and she feels her health and independence are threatened.

A wide range of medical and human service programs established to serve Sylvia and Battista and hundreds of thousands of others are facing a critical workforce shortage caused, in large degree, by the state’s low reimbursement rates for the pay of direct care workers.

Sylvia and Battista both spoke at a State House press conference March 8 in support of companion legislative bills that would address the critical need for direct care workers through mechanisms designed to set fair market pay rates every two years.

All members of the Senate have signed on as co-sponsors of legislation introduced by Sen. Louis DiPalma, D-Middletown setting up a rate review process that draws community representation into an advisory committee working with the Executive Office of Health and Human Services (EOHHS).

DiPalma said it’s the first time in his 14 years in the Senate that any of his bills has received unanimous support from his colleagues.

“This is about investing in hundreds of thousands of Rhode Islanders to ensure they have the services they need, for which they’re eligible, and for which the state is authorized,” DiPalma said.

Rep. Julie A. Casimiro, D-North Kingstown, has introduced the same legislation in the House; one bill aimed at reimbursements for privately-run human service programs licensed by the state and another for medical and clinical programs.

”Our health care system is suffering a crisis of care that has only gotten worse because of the pandemic,” Casimiro said.

“Severely underpaid” direct care workers in an “understaffed and under-supported” system are crossing the Rhode Island border to find better-paying jobs outside the state, she said.

Maureen Maigret, a decades-long advocate for the human services, said, “Everyone would rather get services at home, and it is also the clear law of the land that services be provided in the least restrictive setting possible.

And yet we have failed to build the kind of system that allows this, largely because we have failed to recognize the value of our direct care workers.”

Patrick Crowley, Secretary-Treasurer of the Rhode Island AFL-CIO, spoke from the workers’ perspective. “When working people are uplifted and they can lift up the community that they service, our entire community here in Rhode Island is better off.”

Crowley added: “If these bills can build the scaffolding we need, I say, let’s do it.”

In each case, the rate-setting process would be conducted every two years by the EOHHS with the advice of a 24-member advisory committee.

Tina Spears, executive director of the Community Provider Network of Rhode Island, said “Everyone deserves a living wage.”

“This solution would evaluate the costs” faced by providers and respond to them, she said.

Because the legislation would not have an immediate impact, Rhode Island must use some of its unspent funds from the American Rescue Plan Act to shore up human service agencies, Spears said.

The legislation gives EOHHS until March 1, 2023 to complete the first rate review recommendations to the governor and the General Assembly.

EOHHS would collect data from the state’s Medicaid administration, the state Department of Health, and agencies responsible for addressing poverty, child welfare, mental and behavioral health, developmental disabilities, and aging.

Then EOHHS would analyze the data in conjunction with separate 24-member advisory committees for medical and human services programs.

“It will cost money two years from now, but this is money we should invest,” DiPalma said, so that the state never again goes back to a situation in which a lack of staff forces infants and toddlers with developmental disabilities to wait for early intervention, as they have in recent months.

At least two other states, Massachusetts and Colorado, have adopted similar rate-setting processes, DiPalma said.

He noted that in Massachusetts, health and human services makes up 56 percent of the state budget, although that doesn’t mean Rhode Island should invest the same proportion in its human services sector.

At the same time, DiPalma said, Rhode Island is accountable for a wide swath of services, including child welfare, services for those with disabilities and the elderly, medical care for the poor, and behavioral health and substance abuse programs, among others.

Without a change in the way the state sets rates, those services will become increasingly unavailable, he said.

In 2014 a lack of integrated community-based services for adults with developmental disabilities resulted in a consent decree with the U.S. Department of Justice that is still dogging the state.

In that case, a review of rates paid to private providers of developmental disability services is underway under court order.

For the full text of the bills, follow these links: S 2311, S 2200, H 7180, H 7489