The Power of Advocacy: Remembering Katie Beckett, March 9, 1978-May 18, 2012

Katie Beckett’s parents advocated for better home care regulations, resulting in the creation of the Katie Beckett Waiver. 
President Ronald Reagan meets Katie Beckett, along with her parents, Julia and Mark Beckett, on the tarmac of Cedar Rapids Municipal Airport on September 20, 1984

 

Today, May 18, marks the sixth anniversary of Katie Beckett’s death. Katie, namesake of the well-known Katie Beckett waiver, was able to live at home due to her parents’ commitment to advocating for better home care policies.

Former secretary of health and human services Kathleen Sebelius called Katie “an inadvertent pioneer in the civil rights movement for people with disabilities” and the inspiration for regulations that have allowed more than 500,000 disabled children to live at home since 1981.

Four months after her birth in 1978, Katie contracted viral encephalitis, leaving her partly paralyzed and with lifelong respiratory difficulties. Her parents, who wanted desperately for Katie to live as normal of a life as possible at home, found themselves in bureaucratic limbo. Katie qualified for Supplemental Security Income (SSI), but if she had been taken home, her parents’ incomes would have caused her to lose that eligibility. Yet her hospital care was topping $12,000 a month—six times the cost of home care.

At a news conference in November of 1981, then-President Ronald Regan cited Katie’s case as an example of federal regulations that, though more expensive for taxpayers, force Katie and other medically complex children to stay in institutional settings even though she could be cared for effectively at home.

At the time of the conference, Katie was 3 years old and had been hospitalized since almost birth. The day following the news conference, then-secretary of health and human services Richard S. Schweiker waived federal rules to allow Katie to return home without the loss of federal support.

Secretary Schweiker also created a review board to handle similar cases.  Seibelius said that “thanks to her mother, Julie’s, tireless advocacy…Medicaid policy fundamentally shifted” toward supporting home health care.

Home care worked for Katie, and for many others like her that thrive in a home environment surrounded by family and in-home caregivers that give her the proper amount of support. Despite needing nursing care five times a week and 12 hours a day on a ventilator, Katie graduated from Mount Mercy University in 2001 with a degree in English and creative writing. She also held several jobs over the years, including one as a secretary in a homeless shelter. At the time of her death, Katie was 34 years old—more than three times the age her doctors had predicted she would reach.

The Becketts’ advocacy not only allowed Katie to live a safe home life with comfort and dignity, but resonated around the country. The lasting effects of their commitment to their daughter’s well being have allowed for hundreds of thousands of disabled children to come home from the hospital. BAYADA Manager of Client and Family Advocacy Tara Montague is fortunate to raise her medically complex daughter, Mary, at home due to the Katie Beckett waiver, which is called the Community Care Waiver in her home state of New Jersey.

Tara says, “I am forever grateful to Katie Beckett and her parents. Because of their advocacy, my husband and I were able to bring our daughter home after two months in the NICU, and with home care, she’s been able to remain home with us for the past 20 years.”

If you are hesitant about sharing your voice and advocating for better home care policies, please think of Katie, her family, and their work, which has had a lasting effect across the United States. To get involved, please email advocacy@bayada.com today.

Rest in Peace Katie, your legacy lives on.  – March 9, 1978-May 18, 2012.

NJ Medicaid’s Steve Tunney Visits BAYADA for Presentation on MLTSS

On March 20, Steve Tunney and his team members from New Jersey Medicaid made the trip to the Contract Management Office (CMO) in Parsippany, NJ to present on the state’s Medicaid program, including Managed Long-Term Services and Supports (MLTSS), respite care, and provider relations.

This thoughtful and thorough presentation was helpful in ensuring that we continue to efficiently navigate state regulations and resources in our pursuit of delivering compassionate and reliable care to our clients and communities. Thank you to Steve Tunney, Joe Bongiovanni, and Geralyn Molinari for joining us!

Client & Family Stories: Meet Tara Montague

Tara is an advocate for her family, and yours.

NJ Assemblywoman Carol Murphy with home care advocate Tara and daughter Mary, who has SMA
NJ Assemblywoman Carol Murphy (right) learned about the benefits of home care when she visited Mary and Tara at their home.

Last summer, as lawmakers in Washington, DC debated health care reform, Tara Montague had cause for concern. The proposed legislation included significant cuts to Medicaid, which for Tara and her family, could have been disastrous.

Tara and her husband, Jim, rely on home care nursing for their daughter Mary, 20, who has spinal muscular atrophy (SMA). They know that many families turn to Medicaid to cover the cost of home care and feel fortunate to have private insurance for Mary’s nurses. However, they depend on Medicaid for Mary’s prescriptions and medical equipment, which total in the thousands each month.

“Mary is on numerous medications, and her medical equipment includes a ventilator, oxygen, a wheelchair and hospital bed, feeding pump supplies, a nebulizer, pulse oximeter machine, and more,” said Tara. “Without Medicaid, I don’t know what we’d do, and that’s why I fight so hard to get Mary the benefits she needs.”

Giving families a voice

As a parent of a child with special needs, Tara can understand and empathize with our clients’ daily struggles because she lives it, every day. Last year, she joined BAYADA’s Government Affairs office as manager of client and family advocacy. Here, she continues to fight for Mary, and for every pediatric and adult client who depends on home health care to live with comfort, independence, and dignity.

“Last summer I worked with BAYADA clients who were willing to share their stories with federal legislators to help prevent the Medicaid cuts,” said Tara. “As I continue to grow in this new role, I hope to encourage more and more families to speak up, to have a voice, and to know that they can make a huge difference in the legislative process.”

Getting involved is quick and easy

Tara knows all too well that for clients and families, the biggest obstacle to getting involved is time. That’s why she encourages them to register with BAYADA’s Hearts for Home Care Advocacy Center at heartsforhomecare.com.

We are not looking for a huge time commitment, it’s whatever they feel comfortable with doing,” she said.

The mission of Hearts for Home Care is to be a voice for BAYADA employees, clients, and their families. Through education, advocacy, research, and community service, BAYADA advocates for policies that support the highest quality of home health care services. The online advocacy center keeps clients and families informed about legislative issues at the state and federal level that can impact the home health care industry, and their access to care.

Advocacy can be a simple as taking five minutes to log onto the Hearts for Home Care Advocacy Center website and sending a pre-written email to local, state, and federal legislators. If clients and families want to do more, they can share their stories on the Hearts for Home Care Advocacy Center website; attend a lobby day at their state capital, a legislative round table, or a town hall; they can visit a legislator’s office; or invite a legislator into their home to see, first hand, how home health care professionals help improve lives.

Connecting with families and sharing stories

Tara has a degree in political science and extensive experience in marketing. In her previous role as a community liaison with a BAYADA Pediatrics office in New Jersey, she educated physicians about home health care, started a parent support group, coordinated a family resource fair, and helped families navigate through insurance challenges.

In her new role she hopes to develop training materials and tools for clients and families who want to become more active in advocacy efforts. But even more, she is looking forward to getting to know clients and families from across the country, and helping to share their stories – just like Mary’s.

To learn more about Hearts for Home Care, how you can get involved with advocacy, or how you can share your story, contact Tara at tmontague@bayada.com.

Two Workgroups Formed to Explore Changes in the State Medicaid Reimbursement Model

Recent conversations with MCC Waiver Administrator Michelle White have revealed that the time is right to explore making significant changes in the nursing reimbursement model.  GAO has formed two workgroups to analyze and evaluate options to address Medicaid policy and its reimbursement model for nursing.

First, we’ve formed a BAYADA technical expert group representing the relevant practices and leadership to help inform BAYADA’s recommendations.  The second group is a larger provider workgroup within the SC Association for Home Care & Hospice. As a SCAHHC Board member, I have been asked to co-chair this workgroup to draft industry recommendations.  BAYADA will draw from its internal workgroup to inform the conversation with the industry and Medicaid.  This is a great opportunity to address the challenges and recommend a unified solution to DHHS that can be a win-win for providers, the state, and ultimately- clients.

Thank you to the SC Advisory Council and the workgroups! I look forward to working with you to develop recommendations that will lead to better outcomes for our staff, clients and their families!

BAYADA Chief Government Affairs Officer Successfully Delivers MLTSS Implementation Presentation to MACPAC

Dave Totaro served as a panelist to inform Commissioners about lessons learned from Managed Care and MLTSS implementation in BAYADA states.

Last Thursday BAYADA Home Health Care’s Chief Government Affairs Officer Dave Totaro served as a panelist during the Medicaid and CHIP Payment and Access Commission’s (MACPAC) public meeting in Washington, DC. This opportunity was especially unique and important for BAYADA because MACPAC serves to provide policy and data analysis and make recommendations to Congress, the Secretary of the U.S. Department of Health and Human Services, and the states on a wide array of issues affecting Medicaid and CHIP. We are optimistic that Dave’s insights will help shape the Commission’s future recommendations on state and federal Managed Care and MLTSS policies and procedures.

MACPAC extended the invitation to Dave to serve as the panel’s provider representative due to BAYADA’s experience with Managed Long Term Services and Supports (MLTSS) and managed care implementation across a number of states. Dave accepted the opportunity and successfully delivered his presentation in front of the 17-person Commission and a public audience, which included a number of congressional staffers and CMS representatives.

Aside from Dave, participating panelists were Dennis Heaphy, a MLTSS beneficiary and expert on public health from Massachusetts’s Disability Policy Consortium, and Michelle Bentzien-Purrington, Vice President of MLTSS and Duals Integration at Molina Healthcare. Dave’s presentation focused on BAYADA’s experience in implementing Managed Care across multiple states, particularly the lessons learned that can translate to better implementation in future states looking toward managed care and MLTSS.

tactics for Managed Care Long Term Services and Supports MTLSS implementation success

Dave presented MLTSS implementation as a three-legged stool: Adequate rates, state supports, and federal process changes must all be in place for a successful rollout. Should one of the legs be faulty, then the entire operation is set to fail. The presentation described for the Commission:

  • The need for the state to set adequate reimbursement rates and why inadequate rates affect providers’ ability to recruit, retain, and compete, which can lead to an unhealthy provider network and, ultimately, an access to care issue
  • The need for states to protect a set adequate rate via a rate floor, and the need to regularly review and adjust this rate
  • The need for state oversight and regulation of MCOs so that providers can focus on care delivery rather than managing the administrative burdens and variable practices of each MCO
  • The importance of the federal government equalizing Home and Community Based Services with nursing home care to solve for the institutional bias that currently allows LTSS individuals to access facility care more easily than home and community-based care
  • The need for the federal government to collect uniform data so that MCOs and providers can work together to close care gaps and save the state money

Each section was accompanied by BAYADA-state specific examples, and the presentation concluded with a series of recommendations related to each of the above points. Throughout Dave’s presentation, the Commissioners and audience were engaged and following along to the accompanying PowerPoint. After his presentation, Commissioner Leanna George—the mother of a child currently living in an Intermediate Care Facility—positively commented that rate floor setting was as avenue towards ensuring adequate reimbursement rates that she had not heard of before.

During the Q&A portion of the meeting, Commissioner Brian Burwell asked that each panelist state which area of MLTSS the Commission should focus their research and attention. The other panelists echoed Dave’s sentiments regarding federal changes to rebalance HCBS with nursing home care to remove institutional biases that continue to affect beneficiaries who wish to remain at home.

After the panel wrapped up, Commission Chair Penny Thompson approached Dave to compliment him on his presentation, and Dave has already been contacted by MACPAC’s Executive Director Anne Schwartz regarding his future support and counsel on MLTSS. GAO is ready to work with the Commission on next steps and is excited to be at the table to help recommend policies that are favorable to home care providers.

Thank you to all BAYADA colleagues that assisted Dave in the research and creation of this presentation:

  • Alisa Borovik
  • Melissa Burnside
  • Lee Dobson
  • Linda Hughes
  • Kelly Lawson
  • Louise Lindenmeier
  • Matthew Lippitt
  • Kerry Meabon
  • Tara Montague
  • Laura Ness
  • Jennifer Vranich

NJ GAO 2017 Year in Review

As I reflect on 2017 and what we have accomplished, the first thing that comes to mind is Thank You. Thank you for your support, your engagement and your advocacy efforts — all of which made a difference in the lives of our clients, families and employees.

2017 was the “Year of Client Advocacy and Engagement.” Clients and families engaged lawmakers and the community at-large through home visits, family support group meetings, and phone calls and meetings with lawmakers in Trenton. These efforts ensured that our aides, nurses, and the importance of home care remained top of mind to New Jersey representatives and senators.

2017 was successful in many ways and set us up for even bigger wins in 2018. Below, please find a summary of 2017’s priorities and accomplishments:

• The Managed Medicaid Rate Floor bill was signed into law, effective July 1, 2018. The new law mandates a 100% pass-through of increased reimbursement to aides. In 2018 we will introduce a new bill which will be more reflective of a competitive wage environment and will mirror the original bill with no mandated pass-through.

• The Personal Care Assistant (PCA) fee-for-service rate was raised from $18.00 per hour to $19.00 per hour through a budget resolution, effective July 1, 2017.

• We successfully lobbied against Governor Christie’s intent to end the NJ/PA Reciprocity Tax agreement. This accomplishment saved our employees and BAYADA thousands of dollars in taxes.

• In July, the Private Duty Nursing (PDN) bill was introduced. This bill’s aim is to raise the PDN reimbursement rate by $10 per hour for RNs and LPNs. While the bill did not ultimately pass the state legislature in 2017, it brought awareness to the need for higher reimbursement rates within the program. We will continue to pursue this bill’s passage as a major goal for 2018.

• In conjunction with NJ’s Home Care Association, we successfully lobbied for legislation that permits physical therapy aides to practice in clients’ homes as long as the aides are supervised by a licensed physical therapist every two weeks.

• The BAYADA Champion Awards were held in December. This year we honored Lieutenant Governor-elect Sheila Oliver, Assemblywoman Nancy Munoz, Assemblyman Paul Moriarty and Senator-elect Declan O’Scanlon for their unwavering support of home care.

• BAYADA hosted a fundraiser for Senator-elect Troy Singleton, raising over $13,000 for his election fund.

• BAYADA reviewed and submitted comments to the state regarding the new 10:60 home care regulations.

Looking ahead to 2018, we will be working with Governor-elect Murphy and NJ legislators new and old to continue to advance home care and community-based services for our state’s neediest populations. GAO seeks to push for new laws to improve reimbursement rates within the PDN program, introduce legislation to provide technical changes to the current PCA managed care law, pursue minimum wage law changes, address parking challenges for our nurses and, of course, continue to advocate on behalf of our employees, clients and their families.

Cheers to an exciting year ahead! If you would like to get more involved in New Jersey’s advocacy program, sign up to become a Heart for Home Care Advocate.

Work Continues on Transforming Medicaid

 Last month the North Carolina Department of Health and Human Services (DHHS) submitted an amendment to the 1115 demonstration waiver application, originally submitted in June 2016. This amendment is the next step in the transformation of NC Medicaid and NC Health Choice programs to managed care, driving the state’s goal to implement reform.  This system will address both the physical and behavioral health of North Carolinians. The proposed program design seeks to implement changes that advances high-value care, improves population health, engages and supports providers, and establishes a sustainable program with predictable costs.  Our BAYADA workgroup, made up of technical experts and leadership from across the organization, has reviewed and provided formal comments to both the program design and waiver application. Our comments focus on: ensuring beneficiary access to care; the viability of the provider network; minimizing administrative burden, and establishing meaningful metrics that support and reward quality.

Special thanks to our review BAYADA teams for sharing their insight and operational experience.

Federal Legislators from Maryland Hear from Community Leaders and Constituents on Medicaid

Submitted by Shannon Gahs, Director, MD Government Affairs (GAO)

On November 16, I met with Congressman “Dutch” Ruppersberger (D-MD2) and Senator Chris Van Hollen (D-MD) at a community event about access to Medicaid, which was the same day that the U.S. House of Representatives passed the Tax Cuts and Jobs Act, which includes major provisions affecting Medicaid eligibility and tax issues that will impact our employees.  It is important that our federal legislators see home health care for the good work we do in their districts, as they make decisions that impact how we are able to practice.  The Senate will debate this bill in coming weeks.

 

Building Relationships with Federal Legislators and Community Partners in Delaware

Submitted by Shannon Gahs, Director, DE Government Affairs (GAO)

Wilmington (WIL) Director and Hearts for Home Care Ambassador Kim Roman and I joined the Alzheimer’s Association Delaware Valley Chapter for coffee with Senator Tom Carper (D-DE).  Healthcare issues, including funding for Medicare and eligibility for Medicaid, are increasingly in the federal spotlight and up for debate in Congress.  It is important to build relationships with our federal legislators and to make sure they know how important home health care is in their states!