Medically Complex and Turning 21: Rhode Island Families Struggle to Access Home Care

Brandon Stone (center, seated) has been able to grow up at home among his parents and siblings due to home care nursing. Turning 21 has threatened his ability to continue with that care.

For most people, turning 21 is a milestone to celebrate. But the State of Rhode Island is putting undue pressure on medically complex Rhode Islanders who are turning 21. For those who receive home care services under Medicaid, such as the Katie Beckett waiver, their medical coverage changes on their 21st birthday, which affects who pays for their services, the types of services available to them, and their state-authorized hours and funding levels. Without proper planning and communication, these changes can result in uncertainly of continuity of care and access to home care services.

For young adults like Zach, Corinna, Brandon, and their families, turning 21 has been a source of significant stress and uncertainty rather than the celebration it deserves to be. Upon “aging out” of Medicaid, they have received word from the state that their care would be changing without much warning. Parents of medically complex individuals tend to be lifelong advocates on behalf of their children, and so all three have been able to retain their services on a month-to-month basis. “This is just a band-aid that covers the issue,” says BAYADA Home Health Care’s Government Affairs Director Ashley Sadlier. “Each month, they don’t know whether that band-aid will stay on or get ripped off. Everyone deserves to stay at home if it’s their wish to do so, and it’s arbitrary that a birthday is basically a penalization in Rhode Island.”

The interesting fact is that the State has already created a policy stating that home care children and their families are to be educated on their options by the age of 17. But Rhode Island has not upheld its end of the bargain: Families find that they receive little to no communication from the State, and that when they reach out to find out their children’s care options, the State is slow to respond and typically unable to provide proactive guidance to help families navigate this change . “Modern medicine and advances in home care have allowed for many children to live past the age of 21. That should be a reason to celebrate, not a reason to cut an individual’s services off suddenly,” says Corinna’s mother Michelle. “Home care saves the state money, and it keeps families together. Why would you put a child in danger when it’s clear that home care has enabled them to live their best life?”

Families, home care providers, and and other organizations across the state are currently working with the State to identify a solution. Without home care, clients stand a greater risk of infection, hospitalization, or even a permanent move to a skilled nursing facility. Parents know that a child doesn’t stop being your child when they reach adulthood, but it’s time that Rhode Island recognize this as well.

Rhode Island: In a Year After a Big Win, Four Major Priorities for 2019

Last year was Rhode Island’s first year with a full-time Government Affairs Office (GAO) program—And what a year it was. Together with our Rhode Island office staff, field staff, clients, and families, we were able to band our voices together in advocacy to achieve monumental increases on behalf of our staff and clients.

As a result of our efforts, the State increased Medicaid rates for certified nursing assitants (CNAs), and to the State’s private duty nursing (PDN) program. These increases allow BAYADA to raise field workers’ wages and better compete for a larger segment of the workforce. As a result, BAYADA is in a better position to recruit and retain the staff necessary to keep up with demand, and Rhode Islanders are poised to see increased access to reliable, consistent care.

Our work is far from done. BAYADA’s GAO, along with the continued advocacy of so many of you, is focusing on four key issues at this time:

Priority #1: Continued COLa Adjustments

GAO Director for RI and NY, Ashley Sadlier, testifies in support of COLa adjustments for home care workers

The 2018 increases also included a first-in-the-nation Cost of Living adjustment (COLa), which will provide additional increases to Medicaid rates every year based on the Bureau of Labor Statistics’ Cost of Medical Services annual adjustment. Our first majority priority for 2019 is to ensure that the state keeps its commitment to COLa and includes it in the state budget each year. If passed, this year’s COLa will add an additional 1.9% to current rates to ensure they remain consistent with actual, determined cost of living increases. In March, GAO director Ashley Sadlier testified in support of this important adjustment in front of the House and Senate Finance Committees alongside other supporters. At this time, we see no opposition and continue to monitor COLa through the state’s budget process.

Priority #2: High Acuity Skilled Nursing Rate Modifier

RI representatives Patricia Serpa (left) and Mia Ackerman (right) introduce bill to increase home care rates for high acuity skilled nursing services

One major issue that Rhode Island’s skilled nursing offices often face is recruiting the specialty-trained nurses necessary for more complex, high acuity clients. Luckily, home care supporters in the House agree. Recently, representatives Patricia Serpa and Mia Ackerman introduced House Bill 5621, which calls for a 10% increase to Medicaid reimbursement rates for nursing services provided to clients with tracheostomies and/or ventilators. The bill has taken the next step in the legislative process by being referred to the House Finance Committee. Currently, GAO is awaiting a date for the bill to be heard. If you, a loved one, or your staff or clients would benefit from such a bill, please reach out to asadlier@bayada.com! We hope to have a strong showing of support at the state house when the bill moves forward and we would love your help.

Priority #3: Helping Pediatric Clients Transition to Adult Clients

BAYADA is working with the State of RI to streamline processes for medically complex Rhode Islanders transitioning from pediatric to adult home care

BAYADA has collaborated with the Rhode Island Partnership for Home Care (RIPHC) to advocate for additional resources for pediatric clients currently receiving home nursing services who are transitioning to adult services. Currently, clients that are transitioning face many challenges navigating the system, especially when determining what programs and services they are eligible for. BAYADA and the Partnership have met with the Executive Office of Health and Human Services (EOHHS), the Department of Behavioral Healthcare, and Developmental Disabilities and Hospitals (BHDDH) and Managed Medicaid, to create plans on how to streamline the process for this population and expand eligibility options for families. To date, several BAYADA clients have transitioned to a more appropriate program for the level of care that they require. GAO looks forward to continuing to help our partners at the State to develop plans to ensure parents, caregivers, caseworkers, schools, and agencies are equipped with the resources necessary to assist families in navigating the challenges of transitioning from pediatric to adult home care services.

Priority #4: Continued relationship-building

BAYADA and the RI Partnership for Home Care meet with Rep. Joseph McNamara

While 2018 brought success to Rhode Island’s home care front, GAO continues to build relationships to ensure that legislators and regulators understand the importance of home care to so many of Rhode Island’s families, and support policies that ensure its accesibility. Recently, alongside the Partnership, GAO director Ashley Sadlier met with Rep. Joseph McNamara, the Chairman of the Rhode Island House of Representatives Committee on Health, Education and Welfare. Rep. McNamara is in a key role to influence legislation, and BAYADA looks forward to continuing to be a valuable partner to Chairman McNamara—and many other key legislators and regulators—on issues such as employee training and supervision, access to care, and challenges that providers, employees, and families see within the home care industry.

BAYADA Officially Launches Government Affairs Office Overseeing New York and Rhode Island

The Government Affairs Office (GAO) is excited to announce its expansion into New York and Rhode Island! Expansion into both states means that GAO can begin directly lobbying state lawmakers for better home care policies and reimbursement rates, and can begin to directly involve New York and Rhode Island staff, clients, and families in advocacy efforts.

What is GAO’s mission?

  • The BAYADA Government Affairs Office (GAO) will represent the Company to all levels of local, state and federal government entities, regulatory agencies and community organizations (What we do)
  • Our mission is to act as a voice for our clients, their families and our employees through education, advocacy, service and research (What makes us different)
  • This will result in legislation, regulation, and policies which are supportive of home care services that provide the highest quality of care and will enable patients to remain in their homes (What benefits our clients receive)

What are GAO’s goals?

  • Build awareness
  • Secure adequate resources
  • Foster policies supportive of home health care
  • Engage staff and clients in advocacy on behalf of BAYADA staff and clients

How does GAO accomplish its mission and goals?

GAO operates through a three-pronged approach:

  • Direct Lobbying: Accomplished mainly through the GAO director as determined by BAYADA leadership in the state
  • Grassroots Advocacy: GAO engages employees, clients, and families through our Hearts for Home Care program and our Ambassador program, and through our PACs. Like our Hearts for Home Care Facebook page to be updated on our efforts and relevant home care news.
  • Supporting our Champions: BAYADA supports state and federal legislators that support home care. Legislators that support home care understand our industry’s issues and our staff and clients’ needs. BAYADA supports our champions largely through our state and federal Political Action Committees (PACs). Rhode Island and New York do not yet have PACs, but stay tuned! Full-time, exempt and salaried office employees are able to support our federal legislators by joining BAYADA’s federal PAC.