Help us access the nursing care we need: Indiana Mom Annie Shares Her Voice with RTV6, and wih Lawmakers

Indiana families like the Goellers are struggling to access the in-home nursing care they need to keep their medically-complex children safe at home

Indiana moms are coming out to share their message with State decisionmakers: “Help us access the nursing care we need!” Recently, RTV6—Indianapolis’s ABC affiliate—aired coverage of mom Annie and her daughter Emma. Emma, and more than 14,000 like her across the state, rely on skilled nursing to live safely at home, but often struggle to access it. The State has until June 30 to make a decision to help alleviate families’ struggles by increasing funding for state programs that pay for in-home nursing coverage.

The issue lies in State funding for programs that allow families like the Goellers to access the skilled in-home nursing they need. Because nurses can make more money in hospitals, rehab centers, and other facilities, nurses are more attracted to those settings rather than home care. The constant turnover creates a revolving door of nurses. In the past six years, Emma, who has cerebral palsy, has had dozens of different nurses. “I would say probably at least 20 or 25,” said mom Annie.

Such turnover means that Emma doesn’t see reliable, consistent nursing coverage, which puts her at risk. For many families, this also means that shifts are missed and parents must bear the burden of providing care. Lack of sleep, calling out of work, and being unable to care for other family members are all unintended consequences that come from the lack of skilled in-home nurses.

No child deserves to grow up in a hospital or facility, and no parent deserves to be an untrained nurse for their child. When we unite our voices in advocacy, we can make sure that our message is heard and that decision-makers and key influencers are aware of the issues that they have the power to make changes on. Contact advocacy@bayada.com to learn about how you can share your story and make an impact today.

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.

Reporting Success with Help from our Hearts for Home Care Advocates

Submitted by Lee Dobson, Area Director, NC Government Affairs (GAO)

With active engagement from our Ambassadors and other Hearts for Home Care advocates, together we accomplished the following legislative wins:

·         Obtained an Aide Rate Increase                                  
Lawmakers passed a rate increase for aides services in two (2) Medicaid program – Personal Care Services (PCS) and the Community Alternatives Program for Children (CAP-C) – taking the rate from $13.88 to $15.52, effective July 1, 2017, and to $15.60, effective January 1, 2018.  Due to a technical issue around budget neutrality, an increase was not passed for CAP for disabled adults (CAP-DA). However, we have the commitment of both the General Assembly as well as the Department to institute a fix in the 2018 session.     
Provision successfully passed the General Assembly
·         Protected Certificate of Need (CON) Once Again
There were as many as four bills introduced, but not passed, related to CON to either eliminate or modify CON law. As any change to remove or minimize CON law will negatively impact our existing Medicare offices, GAO will continue to work collaboratively with other health care settings behind-the-scenes to prevent the erosion of CON. Educating lawmakers on its implications is key.  
Provision successfully excluded
·         ID/DD Individuals to Access Services
A budget provision added some 400 slots to the Innovations Waiver program. Originally the provision included 250 slots. After lobbying, discussion, and debate that number was increased. While it won’t completely address the 900 individuals on the waiting list, these additional slots will help our HAB practice provide services to individuals in need.    
Provision successfully passed the General Assembly
·         Medicaid Reform Remains In Play
GAO was invited to a meeting with Secretary Mandy Cohen and Medicaid Director Dave Richard to discuss their plans to align mental health and physical health more quickly than 3 years after transition to managed care. In the development of this new waiver, they intend to include stakeholders as well as other protections. 
Bill is eligible to be taken up during a Special Session

Successful Meeting with Adult Managers of Clinical Operations in PA

Submitted by Rick Hynick, Director, Client and Family Advocacy

Today, I had a meeting with the Adult Managers of Clinical Operations (MCOs) at the Wilkes-Barre/Scranton (WBS) office.  The meeting covered a full day agenda of topics such as new and changed practices, education on products, shared practices that have been effective and a section on quality.  I presented an overview of the Client and Family Advocacy program and the advantages that service offices might see when being involved with the program.  I also presented the many different ways that clients and family members of clients, such as adult children of waiver clients, can be involved in advocacy and take steps to help achieve goals such as rate increases and improvements to regulatory policy.

Bills in Motion at the NC General Assembly

Submitted by Lee Dobson, Area Director, NC Government Affairs (GAO)

  1. Certificate of Need (CON) under Attack  In the course of 48 hours 4 bills related to CON were filed to either eliminate or modify CON law. As any changes to CON will negatively impact our existing Medicare offices, our GAO Advisory Council identified protection of CON as a 2017 legislative goal. GAO continues to meet with the various bill sponsors to educate them the negative impact such changes would have on the home health industry. We continue to work behind-the-scenes to prevent their enactment.
  2. Medicaid Reform under Review  While the Medicaid Reform 1115 c Waiver application is being reviewed by the Centers for Medicare & Medicaid Services (CMS), there is discussion of a new model emerging from Governor Roy Cooper’s office in conjunction with the General Assembly. GAO continues to work with legislative leaders and the department to ensure quality access to care exists in whatever model emerges.
  3. Trillium LME/MCO Proposed CAP-C/DA Pilot  Senator Michael Lee sponsored a bill to allow Trillium Local Management Entity/Managed Care Organization (LME/MCO), a managed mental health, substance use and intellectual/developmental disability payor, to administer a CAP-C/DA pilot in the coastal area. Analysis of the bill indicates this pilot would have a negative impact on recipients. GAO is working with the bill sponsor to explain the pitfalls of moving coastal recipients into a pilot when these individuals are currently transitioning into a new waiver.
  4. Opioid Bill’s Unintended Consequence  Representative Gregory Murphy sponsored a bill to tighten opioid prescriptions. While we support increased oversight for misuse of prescriptions drugs, the bills language, in its current state, will create a safe-haven for pillpushers. AHHC is taking the lead to work with the bill sponsor to modify the language to eliminate the loop-hole and craft a meaningful bill, as intended.

CRO Division Uniting With Philadelphia Families In Advocacy

Submitted by Rick Hynick, Director, Client and Family Advocacy

Director of Government Affairs in Pennsylvania Laura Ness and I met with Division Director Kevin Kuzmick and several of the service office directors from the CRO division at the Government Affairs Office (GAO) this past Wednesday.  The meeting focused on the development of advocacy efforts for the clients and families who receive assistive care services from the Office of Long Term Living waiver in the Philadelphia area service offices.  An exciting outcome from the meeting was the idea of having a “family day” in the Philadelphia area where our families and staff can advocate for a better tomorrow.