PROVIDENCE — The U.S. Department of Justice awarded the parents of a son diagnosed on the autism spectrum $75,000 in damages from the state for failing to ensure the family could access in-home services needed for the boy to continue to live at home.
U.S. Attorney Zachary Cunha’s office announced Wednesday that justice officials had entered a settlement agreement with the Rhode Island Executive Office of Health and Human Services to resolve alleged violations of the Americans with Disabilities Act.
The settlement grew from a 2018 complaint made by the parents of the unnamed minor to the U.S. Attorney’s office, alleging that the state failed to provide their son with home support services under the Rhode Island Medicaid/Katie Beckett Program administered through the state Executive Office of Health and Human Services. The Katie Beckett program allows certain children under age 19 who have long-term disabilities or complex medical needs to become Medicaid eligible.
Home-based therapeutic services
The parents complained that the state authorized the boy to receive 25 to 34 hours per week of home-based therapeutic services and/or applied behavior analysis therapy in his family home beginning in at least 2014, according to Cunha’s office. The state provides such services to enable children with disabilities to remain in their own homes and communities.
The parents alleged, however, that the state continually failed to reasonably adjust its policies to provide back-up care when staff became unavailable, and instead provided only half of the hours of services authorized per week, on average, federal prosecutors said.
The parents said that the lack of needed services placed their son at serious risk of unnecessary segregation from the community. As a result, the parents feared that their son would be forced to leave their home and move to an institution.
After the U.S. Department of Justice opened an investigation, the child entered an out-of-state residential treatment facility for several months.
“Integrated, community-based services for children with intellectual and developmental disabilities are critical to keeping families together and ensuring that children receive care in a supporting and loving environment; no family should be forced to make a choice between care and separation from their children when adequate support is possible in a community setting,” Cunha said in announcing the agreement. “That is what the ADA requires, what today’s agreement is designed to ensure, and what this office will continue to demand as we go forward.”
RI policies for children with intellectual and developmental disabilities
Under the agreement, Rhode Island will modify its policies so that children with intellectual and developmental disabilities such as autism will receive the community-based services that they are authorized. It will require, too, that every family receive a family care plan, allow families to receive services from different provider agencies, and provide oversight to make sure children with disabilities receive authorized community-based services. The state will also create an ombudsman program to allow individuals and their family members to express concerns.
Under the settlement terms, EOHHS will develop an individualized service plan to identify the community-based services necessary for the son to live at home, and pay $75,000 in damages.
“This settlement agreement highlights the priorities of the Medicaid Program and our ongoing commitment to ensure that children and youth have access to high quality care in the least restrictive setting,” Ashley O’Shea, spokeswoman for the executive office, said in an email.
Samuel Salganik, executive director of the Rhode Island Parent Information Network, observed Wednesday that the COVID pandemic had laid bare the state's decades-long failure to adequately reimburse service providers, leading to dramatic staff shortages and families left without much-needed services.
"It is really, really hard now for families to get the services for their children ... Now, we're in a position where the wages are really not competitive," Salganik said.
He continued: "It is the state's responsibility to support those people with special needs, so they can thrive and their families can thrive."
Rhode Island Parent Information Network and the Community Provider Network of Rhode Island issued a joint statement regarding the agreement.
“We applaud the DOJ’s decision to investigate the State’s failure to meet its obligations to provide services and support for thousands of children with disabilities in Rhode Island. We are concerned, however, that the State cannot possibly meet its obligations outlined in the settlement agreement …,” they said.
The groups emphasized that the state relies on nonprofit organizations to provide services and support to children with disabilities as required by federal and state law and that decades of underfunding have led to the types of failures now attracting federal authorities’ attention.
“ Without making significant investments in the systems that children with disabilities rely upon, the state will not be able to comply with the terms of this settlement. That will leave the state at continued risk of DOJ intervention while also continuing to leave children and families without critical services,” they said.
They urged state lawmakers to dedicate a portion of the state’s nearly $900 million surplus and over $1 billion in federal aid to tackle the problem.
“[N]ow is the time to make long-needed investments that will allow providers to recruit and retain high-quality staff to meet our children’s needs,” they said.
Walt Steenbergen, whose 19-year-old son, Charlie, is on the autism spectrum and is diagnosed with neurofibromatosis, said the agreement underscored the need to increase wages for providers whose work helps keep special-needs children in their homes, schools and community.
“I’m hoping that this decision brings to the fore how little service providers are paid to work with the disabled population,” Steenbergen said.
Steenbergen is among the parents who are vocal proponents of legislation that would create an ombudsman to help families navigate the state’s special education system. Ultimately, the Steenbergen family paid for Charlie to attend a residential treatment program in Utah that adapted to his specialized learning.
“I understand the parents’ heartbreak at having to send their disabled child out of state,” Steenbergen said Wednesday.
Charlie has just been approved for Medicaid benefits in Rhode Island. Now, it remains to be seen whether Charlie will receive all the services he needs, his father said.
The matter was handled by Assistant U.S. Attorney Amy Romero in Rhode Island and the Disability Rights Section of the department’s Civil Rights Division.
The Justice Department plays a central role in advancing the ADA’s goals of equal opportunity, full participation, independent living and economic self-sufficiency for people with disabilities.
Anyone may report civil rights violations to the U.S. Attorney’s Office for the District of Rhode Island at https://www.justice.gov/usao-ri-civil-rights-enforcement or (401) 709-5000.
This article originally appeared on The Providence Journal: RI must pay $75K for failure to provide special needs services to child