"Significant" Raises Proposed For RI DD Workers After Court-Ordered Talks

By Gina Macris

RI Governor Dan McKee’s proposal to raise wages from $13.18 to $15.75 an hour for caregivers of adults with developmental disabilities might prevent a widespread worker shortage from getting worse.

But those who have had the frustrating experience trying to recruit and retain workers at the current lower rate told the House Finance Committee June 10 that the proposed raise, while significant, will not be enough to ease the labor crisis that prevents the state from complying with a 2014 civil rights consent decree affecting adults with developmental disabilities.

Other advocates made the broader statement that that paying a living wage to caregivers of all vulnerable populations is a moral imperative. Raising pay to attract more workers also is essential to guaranteeing the civil rights of vulnerable people, no matter what their disability, they said.

The Integration Mandate of the Americans With Disabilities Act, (ADA), reinforced by the 1999 Olmstead decision of the U.S. Supreme Court, says that those with disabilities have a right to receive the services they need to live regular lives in their communities.

If the state does not adopt a comprehensive Olmstead plan to provide integrated, community-based services to all people with disabilities, it will remain vulnerable to more litigation like the ADA complaint of the U.S. Department of Justice (DOJ) which led to the 2014 consent decree, said a spokesman for the Rhode Island Developmental Disabilities Council.

As it is, Rhode Island’s Director of the Division of Developmental Disabilities acknowledged at the House Finance Committee hearing that the state has a “difficult relationship” with the U.S. District Court and the DOJ over the status of implementation and the unfinished work ahead as the agreement nears its conclusion in 2024.

I/DD Population Sitting At Home

Seven years after Rhode Island signed the consent decree, agreeing to end the segregation of sheltered workshops and day care centers, many adults with developmental disabilities are no better off.

For example, Jacob Cohen of North Kingstown, who once had a full schedule of activities in the community, now gets only three hours a week of support time, his father, Howard, told the Finance Committee in written testimony.

At AccessPoint RI, a Cranston-based service agency, 50 of 109 supervisory and direct care jobs are vacant and 60 out of 160 clients are not getting any daytime services, according to the executive director.

The consent decree calls for 40 hours a week of employment-related supports and other activities in the community.

A consultants’ report commissioned by providers says the private service providers lack 1,081 of the 2845 full time direct care workers they need to carry out the requirements of the consent decree. COVID-19 exacerbated the workforce shortage but did not cause it, the consultants said. The consultants said that depending on living arrangements, persons with developmental disabilities have experienced a reduction in services ranging from 49 percent to 71.6 percent, with those in family homes having the severest cutbacks.

The McKee administration’s proposed $15.75 hourly reimbursement rate would represent a wage hike of about $2.50 or more for direct care workers – roughly 20 percent.

The state does not set private-sector wages directly but reimburses the private agencies for wages and employment-related overhead, like taxes and workers compensation. Some providers pay a little more than the current hourly minimum of $13.18, by subsidizing wages with revenue from other types of services.

In addition to raising direct care worker pay, the proposal would raise reimbursement levels for supervisors’ wages from $18.41 to $21.99. There would be no raises for support coordinators or job developers, who are paid $21.47 an hour. Nor would those in a catch-all “professional” category receive a pay increase. They are paid $27.52 an hour, according to a presentation the House Fiscal Advisor made to the Finance Committee.

The overall wage increase would cost a total of $39.7 million in federal-state Medicaid funding, including $16.8 million in state revenue and $22.9 million in federal reimbursements.

Of the state’s share of the cost, $13 million would be re-directed from a $15 million “transition and transformation fund” for developing systemic reforms aimed at quality improvement and the reimbursement model that pays private providers. The reimbursement model was redesigned a decade ago to favor segregated care and has not been fundamentally changed since then.

Robert Marshall, the spokesman for the Rhode Island Developmental Disabilities Council, warned that gutting the so-called “transition and transformation fund” could heighten the state’s non-compliance with the consent decree and leave it open to additional federal action.

House Fiscal Office

With the governor’s proposed raises included, the allocation to the private developmental disabilities system would jump from $260.3 million in federal-state Medicaid funding in the current fiscal year to $297.7 million, an overall increase of $37.4 million, according to the presentation of the House Fiscal Officer, Sharon Reynolds Ferland.

Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association which negotiated the wage hike with the state, called it a “notable first step in rebuilding the workforce serving people with intellectual and developmental disabilities.”

SPEARS CPNRI

“This wage increase will improve the lives of both those who do the work and the families who are served by that work,” she said in written testimony.

But Spears, who had pressed for a rate of $17.50 an hour, told the committee that the state’s final offer of $15.75 does not make it competitive in attracting new workers.

Complicating the salary issue, the administration expects the private agencies to accept group home residents from the state-run developmental disabilities system, which it plans to phase out. The current allocation of $29.7 million for state-run group homes, named Rhode Island Community Living and Supports (RICLAS) would be cut to $9 million in the next budget.

Both the unions representing RICLAS workers and the private providers have expressed skepticism that the privatization is feasible.

The budget calls for the reduction of 50 RICLAS positions. RICLAS pays workers a starting rate of about $18.55 an hour, more than $5 above the current entry-level pay in the private system, and about $2.80 above the proposed new private-pay rate.

On July 1, minimum wages in Connecticut will increase to $16.50 an hour for private-sector direct care workers in the first year of a two-year contract between that state and the Service Employees International Union (SEIU). The rate will jump to $17.25 on July 1, 2022.

Massachusetts will pay direct care workers at privately-run agencies a minimum of $16.10 an hour beginning July 1, the final year of a three-year contract with another branch of the SEIU, according to a salary schedule on a Massachusetts state website related to “personal care attendants.”

Massachusetts already siphons off some of Rhode Island’s best caregivers, said Michael Andrade, President of CPNRI and CEO of Pro-Ability at the Bristol County ARC.

Ruggiero Capitol TV

During the hearing, Rep. Deborah Ruggiero asked Jonathan Womer, Director of the Office of Management and Budget (OMB), to tell her who has been leading the state’s response to the consent decree during the last few years and explain why there has been “so little progress.”

She also wanted to know why she’s hearing reports that the state is “not in very good standing” with the Court or the DOJ and what is being done to change that situation.

Womer introduced Kevin Savage, who has been in charge of the Division of Developmental Disabilities since last July.

“While we haven’t met a number of benchmarks for getting people to work” in the community, Savage said, “there are no longer any sheltered workshops in Rhode Island.”

SAVAGE

“That’s a major achievement of the consent decree,” Savage said. He added that because of the pandemic, meeting goals for employment and community integration has been “extremely challenging,”

During state budget preparations, which began last fall during great economic uncertainty, OMB asked state agencies to submit proposals with 15 percent reductions in their spending plans. The economic outlook has brightened considerably since then.

In January, Chief Judge John J. McConnell, Jr. of the U.S. District Court said Rhode Island must raise direct care wages to $20 an hour by 2024 to attract more direct care workers to Rhode Island providers, who do the work in the field necessary to enable the state to comply with the consent decree.

Two months later, in March, the governor submitted a budget proposal that offered no raises. Then came court-ordered negotiations, which resulted in the administration’s proposal for the $15.75 rate, as well as a separate budget amendment that would comply with another court order, making the developmental disabilities caseload part of formal, consensus-building state budget preparations in November of this year.

During the budget hearing, Savage said, “We are having a difficult time in our relationship with the Court. We do want to repair that.”

“We have tremendous respect for the judge and tremendous respect for the court monitor. We work with some of the best providers you can work with, so it’s really not a matter of not wanting to work with the providers or the court monitor,” Savage said.

The negotiations took too long, he acknowledged.

“We need to pick up the pieces and move forward faster,” he said, engaging the community “much more robustly than we have.”

“We need to get to get to $20 by 2024,” to “stabilize the workforce,” and make other reforms as part of a court ordered, comprehensive three-year compliance plan, he said.

Rep. Alex Marszalkowski, D- Cumberland, chairman of the Human Services Subcommittee of the House Finance Committee, asked why the wage increases would apply to group home workers when the consent decree is limited to issues related to daytime services.

Savage responded that “if we stabilize one part of the workforce, we destabilize the other; the only path is to stabilize the entire system.”

Emphasis on Civil Rights

Later in the hearing, Spears, the CPNRI director, emphasized that hard-working caregivers deserve a living wage and noted that “civil rights protections” are at the heart of the 2014 consent decree. “It’s essentially a corrective action plan to resolve civil rights violations and make sure they never happen again,” she said.

She added: “We are seven years into a ten-year agreement, and there is a tremendous amount of pressure from the Court and the U.S. Department of Justice to achieve the established benchmarks.” As it now stands, the private sector cannot deliver on the compliance the state needs, Spears said.

The Chair of the Long Term Care Coordinating Council (LTCCC) and the representative of the Developmental Disabilities Council each applied a broader perspective on the budget amendments, saying the General Assembly must address the workforce and quality-of-life issues across all vulnerable populations.

Maureen Maigret, chair of the LTCCC, recommended the General Assembly use some of the current Medicaid reimbursement rate, enhanced under provisions of the American Rescue Plan Act, to raise the wages of direct care workers funded by Medicaid’s Home and Community Based Services (HCBS) to the same level proposed for those working in developmental disabilities.

“The issues facing other types of home and community-based services and residential programs are similar to providers of services for persons with developmental disabilities,” Maigret said in written testimony, citing low wages, high turnover and staff burnout, all exacerbated by the pandemic.

“And we know that almost a majority of these workers are women and persons of color whose value has historically been under-valued,” Maigret said.

“Efforts to achieve wage parity for all direct care staff working in government-subsidized Home and Community-Based Services (HCBS) is imperative if the state is to have a quality and accessible LTSS (Long Term Services and Supports) system with appropriate options for persons needing care,” she said.

Marshall, of the DD Council, said Rhode Island could use some of the one-time stimulus funding under provisions of the American Rescue Plan Act to develop an Olmstead plan, a multi-year blueprint for conforming to requirements of the ADA’s Integration Mandate.

Only seven states — Rhode Island among them - still lack such a plan, he said.

Because of the Olmstead decision, Medicaid changed the rules of Home and Community-Based Services programs to help vulnerable persons live as independently as possible at home or in home-like settings.

Marshall said Rhode Island has been in violation of Medicaid’s regulations on home and community-based services since 2014 and is “vulnerable to yet another Department of Justice lawsuit or ineligibility for federal Medicaid match.”

COVID-19 Claims 3 More Lives in RI DD Group Homes; Advocates Press For Justice

By Gina Macris

As the death toll from the coronavirus has ticked up in Rhode Island group homes for adults with developmental disabilities during the last two weeks, two community organizations have turned their focus to the multiple aspects of social justice - in health care equity and in issues of race.

As of June 3, a total of 10 group home residents have died from COVID-19, or 3 more than were reported about two weeks ago, on May 19, according to a spokesman for the state Department of Behavioral healthcare, Developmental Disabilities and Hospitals (BHDDH,)

Those who have died are included in a count of 138 persons with developmental disabilities in congregate care who have tested positive for the disease. The total represents an increase of 16 cases since May 19, according to figures provided by the spokesman.

Of all those who have become ill, 17 persons have been sick enough to be hospitalized at one point or another, the BHDDH spokesman said.

While the incidence of coronavirus is on the wane in Rhode Island, Disability Rights Rhode Island (DRRI) has been scrutinizing what it says are discriminatory state health care guidelines which could still be used in the future to ration care if the hospital system becomes overwhelmed.

A spokesman for the Rhode Island Department of Health said DRRI and several disability-related partner organizations have provided “important feedback” that will be considered as health officials move forward.

The developmental disabilities community has been preoccupied in the last few months with issues of equity in access to protective equipment and health care resources for vulnerable people, but ongoing concerns about civil rights should be put in a broader context in which racism permeates, said Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI).

Spears and Michael Andrade, President of the CPNRI Board of Directors, issued a statement June 2 saying that CPNRI “stands in solidarity with the people and communities in our state and across the country who continue to bear the physical, emotional, and economic effects of racism” - including people of color who belong to the direct care workforce and families supported by CPNRI.

The statement was prompted by the death of George Floyd, a 46 year-old black man who suffered a heart attack May 25 after a Minneapolis police officer put his knee to the man’s neck for nearly nine minutes. Floyd’s death has roiled the nation, from protests in the streets to politics at the highest levels in Washington.

“We speak out against the historical and current violence against Black, brown, and other members of marginalized communities,” Spears and Andrade said. “As a network, we remain committed to upholding social justice and dismantling systems of oppression and discrimination that further violence and neglect,” the pair said, pledging to work with other like-minded groups throughout the state and the nation to “combat the root causes and outcomes of racism.”

Meanwhile, Disability Rights Rhode Island (DRRI) has recommended changes to eliminate what it says are inherently discriminatory provisions in recent guidelines issued by the state Department of Health that could be used in allocating health care resources.

DRRI acknowledges that the discussion remains theoretical – for now – as hospitals have not exceeded their capacities and emergency facilities set up to deal with an overload of coronavirus patients have remained unused.

In a May 19 letter to the Director of Health, Nicole Alexander-Scott, MD MPH, DRRI and other partner organizations have said the “Crisis Standards of Care”, issued April 25, leave the door open for discrimination against those with disabilities and older Rhode Islanders by allowing health care officials to make subjective decisions about patients’ long-range survival or quality of life after discharge.

In response to a query from Developmental Disability News, a DOH spokesman said the department has “a commitment to ensuring equitable and just access to care for all Rhode Islanders, especially more vulnerable populations.

“We worked hard to try to have that commitment reflected in the document that was developed. Having said that, this is important feedback that we are going to consider internally as we look forward and think about ways that we can better ensure health equity for everyone throughout the state,” said the spokesman.

DRRI noted that Rhode Island’s principle for ensuring equity in access to healthcare “acknowledges the need for transparent criteria for allocating resources that are free from influence by inappropriate factors such as race, gender, socioeconomic status or sexual identity.” But the letter said that “disability and age” are missing from the list of inappropriate factors. This omission “appears intentional,” since the triage assessments and criteria described in the guidelines authorize “explicit and implicit” consideration of age and disability in excluding patients from access to scarce resources.

Among other things, the guidelines allow hospitals to screen out patients having a “medical condition associated with a short life expectancy” from access to critical healthcare resources, DRRI said. “Because ‘short life-expectancy’ is not defined, hospitals and clinicians are free to interpret the term and make subjective judgments regarding its meaning,” the letter said.

Many people who are aging or have disabilities also experience medical conditions that can be perceived as shortening life expectancy, and are at higher risk for being excluded from consideration based on clinicians’ subjective decisions, the letter said.

Although the guidelines take into account some conditions which are accommodated during the triage process, they fail to recognize pre-existing impairments such as limitations in mobility or speech, which would have an effect on an assessment of traumatic brain injury, DRRI said.

Nor do the guidelines mention federal laws applying to hospitals that prohibit discrimination on the basis of disability and require hospitals to make reasonable modifications to policies and practices to allow persons with disabilities to benefit from the services provided.

In a detailed analysis of the DOH guidelines, DRRI described the pertinent sections of federal anti-discrimination laws: Title II of the Americans With Disabilities Act, Section 504 of the Rehabilitation Act of 1973, and Section 1557 of the Patient Protection and Affordable Care Act (ACA.)

DRRI recommended revising the Crisis Standards of Care to comply with civil rights laws by eliminating criteria linked to survival beyond the illness which prompted the hospitalization at hand and by requiring hospitals to make accommodations for disabilities, like limitations in mobility and communications skills.

It also recommended that DOH broaden the grounds for appeal of triage decisions to include discrimination on the grounds of disability. The current grounds for appeal, permitted only for technical or procedural injustices, are overly narrow, DRRI said. To read the letter in its entirety, click here.

The letter was signed by Morna Murray, executive director of DRRI, as well as Steven Brown, executive director of the American Civil Liberties Union in Rhode Island; Amy Grattan, executive director of the Paul V. Sherlock Center on Disabilities at Rhode Island College; Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, Advocates in Action; Joanna Scocchi, director of the ARC Rhode Island Family Advocacy Network; Debra L. Sharpe, executive director of the Brain Injiury Association of Rhode Island; Spears, the CPNRI director, Marc Anthony Gallucci, executive director of the Ocean State Center for Independent Living; and Kim M. Einloth and Kiernan O’Donnell, co-chairs of the Rhode Island Employment First Task Force.

RI Plans For Emergency Funding To Shore Up DD Providers After Community Calls For Help

By Gina Macris

Rhode Island Governor Gina Raimondo announced March 26 that the state will soon release a total of $15.4 million in state and federal Medicaid “retainer payments” to shore up private service providers facing unprecedented challenges in the coronavirus pandemic.

The announcement came hours after representatives of private service providers and a prominent advocacy group expressed anxiety about a heightened vulnerability of people with developmental disabilities to the disease and called on the governor to do more.

The retainer payments “are seen as essential to supporting our critical DD (developmental disability) partners, many of which had to cease services due to COVID 19,” a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) said late in the afternoon.

BHDDH and the state’s Medicaid system, managed by the Executive Office of Health and Human Services, are working to make the funds available “as soon as possible,” the spokesman said. He said the retainer payments have been approved for a three-month period, with the first checks going out as early as next week.

Several hours before the announcement, spokesmen for the Community Provider Network of Rhode Island (CPNRI) and the Developmental Disabilities Council of Rhode Island issued a statement detailing the vulnerabilities of individuals with developmental disabilities and those who live and work with them.

“We need to act now to address the needs of our community, which we have identified repeatedly to the administration,” said Michael Andrade, President of CPNRI, a trade association of 24 private agencies licensed by the state to provide support and care for adults with developmental disabilities – including those in group homes.

Andrade said state testing priorities and emergency planning must include group homes and people in shared living, an arrangement in which adults with developmental disabilities live in private apartments or single-family houses with a host family.

Kevin Nerney, executive director of the Developmental Disabilities Council, agreed that testing, protective equipment, and other emergency measures “must be a priority” for vulnerable individuals and their caregivers.

“There is an obvious concern about spreading the virus by those receiving services and those who provide those services,” Nerney said.

“As people become sick, they may still require in-person services. We want to make sure it is possible to continue services when necessary, even for the sick,” Nerney said.

Those who care for people with developmental challenges must be considered “the essential health care workers that they are” and must be compensated appropriately during the crisis, Nerney said.

The BHDDH spokesman said later in the day that the administration has taken steps toward a declaration that those who work with persons with disabilities are “essential health care workers” necessary in the state’s emergency response to the virus.

The spokesman, Randal Edgar, said state human services officials have “escalated” the needs of developmental disability service providers for Personal Protective Equipment (PPE) to the Rhode Island Emergency Management Agency and are trying to expand the availability of interpreter services. Some direct care workers who provided daytime services have been re-assigned to residential programs, Edgar said.

About 4,000 Rhode Islanders with developmental disabilities receive services funded by BHDDH, including 1180 who live in group homes. Many adults with developmental disabilities face challenges in practicing good hygiene and social distancing and have underlying medical conditions that put their immune systems at greater risk than the average population.

Edgar said the governor, BHDDH and EOHHS “are committed to meeting the needs of the state’s most vulnerable residents. This pandemic is challenging our State and all Rhode Islanders, and we recognize that there is significant impact on individuals with disabilities, their families, and the direct care workforce who support them. We are working tirelessly to ensure that resources are in place to support residents with developmental disabilities as well as the providers who care for this population.”

In a televised afternoon briefing March 26, Raimondo said her goal is to develop the capacity to test 1,000 people a day in a week’s time, a pre-requisite in defining the spread of the coronavirus and informing the state’s efforts to contain it.

Rhode Island has about 5,000 workers in the developmental disabilities field, not counting family members who also provide care and support, according to CPNRI and Nerney.

Tina Spears, executive director of CPNRI, said in an email that providers are “extremely nervous” about infection among those in their care and about their ability and readiness to respond to such a scenario.

“We are deeply troubled by the lack of emergency planning,” she said in the email, sent early in the afternoon.

Providers are taking emergency measures independent of state government, but they need more support and resources, she said.

“We are equally concerned for family caregivers at home,” said. “If and when they become ill, we must be able to step in and support the family,” Spears said.

Most of the 4000 authorized to receive services from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) live at home and receive daytime services from a private agency.

Of the total BHDDH caseload, about 700 individuals living at home also have service programs directed independently by their families. These families need flexibility to hire additional staff – including other family members – in an emergency, Nerney said in a separate letter to Raimondo that was signed by the leaders of several organizations serving the developmental disabilities population.

Spears, meanwhile, said that with daytime programs closed, agencies are unable to provide services to participants living in family homes on a broad scale because of a lack of authorization from the state.

She said providers were given the authorization to provide “tele-health” services, but “this is not helpful in most situations for the people we support.”

Some providers have reluctantly laid off staff, because they cannot afford to keep them, Spears said. The state’s fee-for-service system reimburses private agencies only after services are provided, usually in ratios of one worker to several clients. One-to-one services are more costly, and no adjustments have been made to authorize them on a broad scale, Spears said.

“We would prefer to be overstaffed at this point and be able to provide more support in the community. This has been our consistent goal,” Spears said.

After the BHDDH announcement, Spears said in a telephone interview that she was “heartened” by the news of the retainer payments but is awaiting additional detail. Spears said she hopes the payments cover pay increases for “our vital workers.”

Spears, Andrade, Nerney and others had asked Raimondo for emergency funding to help caregivers and providers weather the crisis. The privately-run system of services was already in precarious financial health before the crisis, according to consultants for BHDDH.

Nerney has urged Raimondo to follow the lead of the state of Connecticut, which continues to pay private service providers, raising rates.

As part of Connecticut’s emergency preparedness response, the state’s Department of Developmental Services has increased allocations to group home operators by 25 percent and has increased payments to providers of daytime programs by 5 percent, with the proviso that providers will not lay off workers.

The Connecticut advisory to developmental disability service providers was attached to a letter from Nerney to Raimondo dated March 23. It raised many of the same concerns as the CPNRI statement and and aired specific questions from families seeking guidance about details of the care of family members at home who have developmental disabilities.

In addition to Nerney, the letter was signed by Amy Grattan, Executive Director of the Sherlock Center on Disabilities; Deanne Gagne, Coordinator of the Cross Disability Coalition; Sam Salganik, Executive Director of the Rhode Island Parent Information Network; Deb Kney, Executive Director of Advocates in Action; Joanna Scocchi, Executive Director of the ARC Rhode Island Family Advocacy; and Ken Renaud, Coordinator of RI FORCE, a family advocacy group.