COVID-19 Vaccinations Begin At RI DD Group Homes

By Gina Macris

COVID-19 vaccine daniel-schludi-mAGZNECMcUg-unsplash (2).jpg

Rhode Islanders with developmental disabilities aged 65 and over and their group home caregivers are receiving the COVID-19 vaccine through the CVS/Walgreen partnership, according to a spokeswoman for the state Department of Health.

More than 300 group home residents and staff were vaccinated over the weekend of Jan. 16-17, said Tina Spears, a representative of private agencies who is coordinating information between the group home operators, DOH officials, and those involved directly in the vaccination process.

“We are hoping to scale up the number this week and every week thereafter,” she said Jan. 20. Spears is executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association. By Jan. 21, tentative plans were being formulated to expand vaccination in the coming days to include younger group home residents with underlying medical conditions, as well as their housemates and staff, Spears said.

The DOH spokeswoman said that all adults with developmental disabilities in congregate care are included in Phase 1 of the vaccination program, with those in the 65 and older age bracket in Phase 1.2 and those younger than 65 in Phase 1.4. The spokeswoman, Anna Tomasulo, could not say exactly when Phase 1.4 would begin, or when adults with developmental disabilities who have other living arrangements might be offered the vaccine.

New Language On Support Persons In Hospitals

In a separate health-related development, DOH has put in place a COVID-19 emergency regulation which says hospitals “shall not unreasonably deny entry to support persons of an individual with a disability as defined by the Americans With Disabilities Act of 1990.”

The regulation says hospitals must provide accommodations to patients with disabilities so that they may be accompanied by as many as two support persons who can facilitate communication with hospital staff and ensure equal access to treatment and informed consent. Notices about the regulations must be posted in English and a minimum of three other languages commonly used by patients and staff in conspicuous places in the hospitals, along with a DOH telephone number to call with concerns.

Disability Rights Rhode Island (DRRI) led a led a push for the new regulation, which previously had been expressed as a matter of policy and unevenly adopted by hospitals, resulting in dozens of complaints that continued throughout 2020.

Morna Murray, executive director of DRRI, said, “We hope this language will go a long way toward educating everyone about the rights of individuals with disabilities to access their own health care.That is what having an essential support person is all about.”

“We will be monitoring the situation and are cautiously hopeful that this more rigorous regulatory language will be consistently implemented,” Murray said in a statement.

Access to COVID-19 vaccine remains another hurdle for advocates of adults with developmental disabilities in Rhode Island and throughout the country.

The American Academy of Developmental Medicine and Dentistry (AADMD) and other organizations have cited research highlighting COVID risks for adults with developmental disabilities, who as a group tend to have a higher rate of underlying medical conditions than the general public and are less likely to be able to follow mask-wearing and personal hygiene guidelines.

In December, the federal Centers for Disease Control (CDC) put Down syndrome on the list of those who should be vaccinated. But the CDC also says that “most people with developmental or behavioral disorders are not naturally at higher risk for becoming infected with or having severe illness from COVID-19,” a statement highlighted by Tomasulo, the DOH spokeswoman.

She said that the federal Advisory Committee on Immunization Practices (ACIP) makes recommendations to the CDC for the entire nation, while Rhode Island’s Vaccine Advisory Subcommittee “reviews these recommendations and determines how best to apply them to Rhode Island’s unique demography.

She offered two links for comparing the CDC recommendations for vaccine prioritization and the DOH Phase 1 plan:

Tomasulo continued: “We want all Rhode Islanders who want to be vaccinated to get vaccinated. However, our supply is limited. Our Phase 1 priorities are to ensure that our healthcare infrastructure is able to continue to respond to the COVID-19 pandemic, and to protect those most at risk in long-term care facilities. As supply allows, we move on to other priority populations.”

Within Phase 1, one group may start receiving the vaccine before a previous group is completed, depending on the vaccine supply and the resources to administer it, she said.

Advocates Call For Vaccination of High-Risk DD Population And Caregivers

By Gina Macris

While there is growing research that COVID-19 puts people with developmental disabilities at a higher risk for serious illness or death than virtually any other compromised group, Rhode Island’s disability rights advocates remain uncertain whether the state will follow through on intentions to include this population in the initial vaccination phase.

Since the pandemic hit Rhode Island last March, it has affected nearly 30 percent of adults with developmental disabilities living in group homes and an uncounted number of others with intellectual or developmental challenges living in other settings. A total of about 550 group home staff have tested positive for the virus.

On Dec. 28, the Centers for Disease Control (CDC) announced that it had added Down syndrome — one of the most common developmental disabilities — to the list of conditions that put people at risk from serious illness or death from COVID-19.

People with Down syndrome are at higher risk for early-onset dementia as well as congenital heart disease, obesity, gastrointestinal disorders, and other chronic medical conditions.

On Jan. 8, the chair of the Rhode Island Developmental Disabilities Nurses Association (RIDDNA), wrote to the state’s public health epidemiologist, as well as coordinators for vaccine distribution, seeking confirmation that Phase 1 vaccinations, now underway, will include adults with developmental disabilities and the nurses and direct care staff who work with them.

Others are also pressing for similar assurances from officials of the Department of Health (DOH), including the health department’s counterparts at the state Department of Behavioral Health, Developmental Disabilities and Hospitals (BHDDH) and the Community Provider Network of Rhode Island (CPNRI), a trade association of private service agencies operating group homes and offering daytime services to adults with developmental disabilities.

Tina Spears, CPNRI’s executive director, said initial advice from DOH was that adults with developmental disabilities are to be prioritized for vaccination in the ongoing Phase 1 distribution.

At the same time, this population does not appear on the patient list of the CVS-Walgreen’s partnership assigned by DOH to handle long-term care vaccinations, Spears said.

She said state officials need to “step up” and make the Phase 1 designation explicit.

The DOH COVID-19 portal says Phase 1 includes “long-term care facility staff and residents” but does not specifically mention adults with developmental disabilities. As examples of long-term care settings, DOH lists “group homes for individuals primarily 65 and older, assisted living, (and) elderly housing with residential services.”

Spears, meanwhile, said that she considers anyone eligible for developmental disability services from BHDDH to be receiving long-term care, whether in a residential setting or during the day in the community.

Fournier, the chair of the nurses’ group, highlighted the conclusions of research that has shown adults with developmental disabilities have greater incidences of the same underlying chronic medical conditions that have already been recognized as risk factors in non-disabled adults. These underlying conditions include heart disease, diabetes, various cancers, and asthma, as well as obesity and seizure activity.

Fournier cited joint recommendations of the American Academy of Developmental Medicine and Dentistry (AADMD) and a coalition of more than a dozen nationwide disability rights organizations that vaccine programs prioritize adults with developmental disabilities and all those who care for them, whether paid caregivers or unpaid family members.

Those living and working in group homes and other congregate care settings should be considered at the same risk as patients and staffs of nursing homes, according to a joint position paper issued by the AADMD and the disability rights groups.

Several research studies analyzing COVID-19 cases indicate that that those with intellectual or developmental challenges are more likely to die from COVID-19 than most, if not all, risk groups. They include an case analysis of privately-insured COVID-19 patients completed in November ty the nonprofit FAIR Health in conjunction with the John Hopkins School of Medicine.

Only 10 states, none of them in New England, have explicitly prioritized adults with developmental disabilities in their vaccination programs, according to the American Network of Community Options and Resources (ANCOR).

In Rhode Island, Fournier’s letter to public health epidemiologist Genevieve Caron pointed out that home care nurses have been receiving the vaccine, but nurses who work with the developmental disabilities population also work in home settings and have not been identified as vaccine-eligible.  

DOH did not immediately respond to a request for comment.

As of Jan. 6, a total of 351 of 1,212 residents in congregate care had tested positive for COVID-19 since the counting began last spring, according to figures compiled by state officials and obtained by Developmental Disability News.

The virus has affected a total of 214 group homes – all but 77 facilities in the privately-run system under license from the state, according to these figures.

A total of 14 group home residents and staff members have died.

In November, BHDDH had reported 12 deaths, including 9 group home residents and 3 staff members, but more recently, BHDDH lawyers, through a spokesman, declined to say whether the two most recent deaths were staff members or residents, They cited patient privacy concerns.

In its most recent update on COVID -19 on Jan. 8, BHDDH officials acknowledged they have received many inquiries about vaccination from the developmental disabilities community.

In a statement, officials said:

“We believe that all at-risk individuals, providers, and staff should be vaccinated and we have strongly and repeatedly advocated for that – however it is a challenge with a very limited supply of vaccine at this time. We expect that as more pharmaceutical firms get their vaccines approved, the timetable will become more generous. As soon as vaccinations dates become available, we will make information available.”

A global vaccine tracker maintained by Bloomberg News shows that Rhode Island has administered 2.98 per 100 people, for a total of 32,000 injections, or 43.7 percent of the state’s total current supply of 72,000 units. The tracker shows that 1,798 persons have received a second dose.

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 Consent Decree Coordinator, Tina Spears, To Lead CPNRI, Private Provider Trade Association

Tina Spears * Photo Courtesy CPNRI

Tina Spears * Photo Courtesy CPNRI

By Gina Macris

Tina Spears, who for 16 months has served as Rhode Island’s coordinator for state compliance with a 2014 federal civil rights consent decree affecting adults with developmental disabilities, has resigned to accept a position as executive director of the Community Provider Network of Rhode Island (CPNRI).

Spears’ last day at the Executive Office of Health and Human Services will be Friday, April 12, according to EOHHS spokesman David Levesque.

Spears has broad experience with issues involving developmental disabilities as a parent, advocate and policy maker, emphasizing the importance of the “consumer voice” throughout all her work, according to a statement from a CPNRI spokesman.

Before joining EOHHS as the state’s consent decree coordinator – a position required by the 2014 agreement between the state and the U.S. Department of Justice - she worked as a fiscal analyst for the state Senate, specializing in human service issues.

Spears also has provided direct support for families as a former government relations director of the Rhode Island Parent Information Network.

CPNRI Board members “were pleased to choose Tina from a pool of highly qualified applicants due to her significant experience advocating for people with disabilities and having worked effectively inside and outside state government,” the Board president, Gloria Quinn, said in a statement.

“We are excited to work with Tina as she leads CPNRI through a pivotal moment” in the transformation of the state’s privately-run service system for adults facing intellectual and developmental challenges, said Quinn. She is executive director of West Bay Residential Services, one of 22 private service agencies that make up CPNRI.

Quinn said members of CPNRI “are confident she will take our association to its next level of impact,” resulting in an improved quality of life for adults with developmental disabilities in Rhode Island.

Spears succeeds Donna Martin, who had served as CPNRI’s executive director from 2005 until March 1.

“The state thanks Tina for her commendable service” as consent decree coordinator, “and we look forward to working with Tina in her new position,” Levesque, the EOHHS spokesman, said in a statement.

Brian Gosselin, the chief strategy officer at EOHHS, will serve as the interim consent decree coordinator while the state searches for a permanent successor to Spears, Levesque said. It will be Gosselin’s second stint as interim coordinator.

“The state values the critical role the consent decree coordinator plays in the success of compliance activities of state agencies” in connection to the consent decree, Levesque said.

Counting Gosselin, there have been five consent decree coordinators since the agreement was signed April 8, 2014 and went into effect the following day.

Donna Martin, Leader Of RI DD Provider Network, To Take On New Role At National Level

Donna Martin * Photo By Anne Peters

Donna Martin * Photo By Anne Peters

By Gina Macris

Donna Martin, the leader of a trade association representing two thirds of Rhode Island’s private providers of developmental disability services, will move to a new national advocacy post effective March 1.

Since 2005, Martin has worked as executive director of the Community Provider Network of Rhode Island (CPNRI), helping about two dozen members weather drastic cuts in state and federal Medicaid funding in imposed by the General Assembly in 2011, with rippling effects on services for adults with developmental disabilities that still linger.

Effective March 1, Martin will be Director for State Partnerships and Special Projects at the American Network of Community Options and Resources (ANCOR) – the national umbrella organization for CPNRI and 54 other trade associations representing other states.

In a recent memo to CPNRI members, Martin said she had not been looking for a new job because she loves her work in Rhode Island.

“It has been a remarkable experience which has been a major influence on my professional path,” Martin said.

The opportunity to do similar work on a national scale “very unexpectedly presented itself, and I feel it’s the right time for me personally and professionally to embrace it,” Martin said.

Until now, Martin has been a member of ANCOR’s Board of Directors, an elected position she said she has resigned to join the staff. She said she will not have to relocate to the Washington area to take the job.

In her new role, she said, she will lead the work on a federal grant ANCOR has received to help providers best prepare for implementing managed care initiatives and also support state associations and help build their participation in the national organization.

Martin said that during her 19 years at CPNRI – she joined the staff in 2001 – she has developed “really strong relationships with members” of the organization.

“I understand the commitment they have made” to provide the best possible support to a vulnerable population, “in spite of difficult financial conditions and a draconian regulatory environment,” Martin said.

“That’s what strengthened me in my work,” she said.

Martin said she would advise her successor to “continue strengthening relationships” with the state legislature, the executive branch of government, and others. “Focus on those relationships,” she said.

“We really do better when we’re building in the same direction,” Martin said.