Advocacy and Autism Awareness Month Collide

In honor of Autism Awareness Month, Hearts for Home Care is celebrating those living with Autism Spectrum Disorder and raising awareness on the issues they face every day.

26-year-old Grant Williams with father Bob.

Grant Williams is an active and intellectually curious 26-year-old living with autism, cerebral palsy, and was born with a Traumatic Brain Injury (TBI). However, none of those diagnoses slow him down! “Grant isn’t a geriatric—he is energetic and needs to be able to go outside and engage in his environment daily. But he can’t do it alone—his cognitive and communication skills, plus his balance and coordination, prevent him from being fully independent,” Grant’s father, Bob Williams says. That’s where Grant’s home health aides come to his assistance.

Grant is part of the New Jersey Personal Care Assistant (PCA) program – a state-funded program that allows qualifying adults and seniors who may otherwise be relegated to full-time facility care (i.e. nursing home), to remain in their communities as independently as possible with assistance from home health aides (HHAs). This program assists individuals living with physical and developmental disabilities with daily activities like dressing, bathing, walking, and tasks that would otherwise be too difficult or too dangerous for the individual to perform alone. The PCA program has been a lifeline for the William’s family for the past five years and since COVID-19 hit and shut down Grant’s full-day program, care at home became even more vital to their family.

Grant with HHA Grace.

Bob also has his own permanent disability, and Grant’s HHA care was especially critical after Bob’s invasive back surgery all but incapacitated him in December. “Grant is a big guy — he’s about 5’11 and 175 pounds, so I can’t manage him with my own health issues, plus his,” says Bob. However, finding a home health aide for those who are qualified for the PCA program and authorized by their doctors for home health aide care still isn’t easy. Grant has had many aides leave for other industries and settings. Bob has seen a revolving door of aides and understands why it is so difficult for them to stay in the industry, even if they love what they do: “Aides who love their work tend to leave the industry to receive a higher education degree, or to find work in other settings like hospitals or nursing homes. At the end of the day, they can’t make fair wages in the home care field,” says Bob.

Bob has been an avid advocate for Grant throughout his life, ensuring he has the best care and opportunities possible. However, this past year Bob has jumped through hoops to ensure the safety of his son and those taking care of him. When his treasured aide Grace was having difficulty getting to and from Grant’s parents’ homes from her hometown of Camden due to public transportation issues stemming from COVID, Bob took it upon himself to drive Grace to and from her shifts. Now, Grace, like many of Grant’s former aides, has been reassigned to a new client closer to her home.

“It’s a revolving door of aides—and Grant’s ability to continue to learn and habilitate is affected. The workforce is thinning out—and COVID is making it more difficult for people to enter the home healthcare industry because of the dangers of the virus and the unsustainability of low wages in the field.”

Grant and Bob were recently featured in a Scripps Network piece highlighting these exact issues that have plagued state-funded home health programs for years and have only been exacerbated due to COVID-19.

Scripps Network piece shedding light on the demand for home health aides across the country ─ featuring Bob and Grant Williams.

Bob continues to go above and beyond to advocate for his son in hopes that New Jersey’s governor and legislature will consider expanding access to home health care and services designed specifically for autistic and other developmentally delayed individuals. The state’s PCA program and many other home and community-based services (HCBS) are fully funded by the state. And—as the state population continues to age and as more individuals and the government see the health, safety, and cost-savings benefits of home care—it is important for state governments to ensure that the workforce is sufficient to allow residents and their families the care they need to stay safe in their homes, and as independent as possible within their communities.

Advocacy Matters!

At Hearts for Home Care, we help those that care about home care by enabling you to get involved at the capacity in which you’re able to do so. Email us at advocacy@bayada.com or follow us on Facebook.com/Hearts4HomeCare in order to learn more about the home care advocacy community and find opportunities to get involved.

GAO RI: Annual Cost of Living Adjustment (COLA) Increase Secured for 2019-2020; Additional 5.9% Proposed for 2021!

BAYADA staff and clients were instrumental in gaining public and legislative awareness on home care issues in Rhode Island. Here, client Brandon Stone (right) is pictured with mom Sherry (lower left) and nurse Jessica (center)

In 2019, GAO and industry advocacy led to the successful renewal of the Cost of Living Adjustment (COLA) of 1.9% for Medicaid reimbursement rates for Certified Nursing Assistant (CNA) and Skilled Nursing services. This adds an additional $232,941 to BAYADA’s annual revenue, and $26,535 to the company’s annual operating surplus.

The first-in-the-nation COLA adjustment was included in 2018 state legislation as a result of the advocacy efforts of GAO, client and employee Ambassadors and advocates, and Rhode Island industry partners, as well as a public affairs campaign that led to local print and broadcast media coverage on the need for regular rate reviews to ensure that reimbursements for home care services were adjusted annually to keep up with real costs of living and conducting business.

By continuing to advocate for the renewal of the COLA increase every year, then Rhode Island service offices will be able to—at their discretion—increase field staff wages, thereby increasing caregiver recruitment and retention rates and enabling clients to experience less missed shifts.

BREAKING: Due to GAO, BAYADA, and industry advocacy, RI Governor Raimondo has already proposed a 5.9% increase for skilled nursing and CNA services in the 2020-2021 budget! If successfully passed through both chambers in the state house, effective July 1, 2020, this increase will add $219,791 to BAYADA’s yearly revenue, and $65,937 to BAYADA’s annual operating surplus.

Thank you to our RI staff and clients for your continued commitment to advocacy on behalf of all of Rhode Island’s caregivers, and the medically fragile and vulnerable populations!

Building the Client & Family Advocacy Program

Submitted by Rick Hynick, Director, Client and Family Advocacy (GAO)

 

On August 23, the Government Affairs Office (GAO) gathered in Philadelphia, along with a few office and field employees with advanced advocacy interests.  The goal of the day was to develop tactics to engage both clients and employees who enjoy advocacy to influence decision makers to support home health care.  Building awareness, Inspiring engagement and Empowering advocates were three main phases that were at the heart of our discussions related to grassroots advocacy efforts for our clients and families here at BAYADA and also for the many others who will be moved to join us from the community.

Client and Family Advocacy Update

Submitted By Rick Hynick, Director, Government Affairs, Client and Family Advocacy

The Client and Family Advocacy program has some exciting updates that are underway.  When you have a moment, visit our advocacy website at Heartsforhomecare.com and see first-hand about many of the ideas we are working on.  Once you get to the site, click on Families and the Community.  Here you will find many exciting ways to be part of our advocacy program.  Read of a heart-touching story of a Mom who is now involved with advocacy to help her daughter and others like her.  Find an opportunity to share your story and learn of the many ways you could participate in advocacy as well as staying connected with news and resources and a blog.

We are also working on the development of a Grassroots Advocacy plan for our clients and families and staff.  Giving our valued clients and staff a voice and involvement in advocacy activities such as meeting with a legislator or writing a letter or attending a community event as part of a larger movement could strengthen our voice in home care and help us to obtain better resources so we can have a positive impact and give our clients the highest quality of care.  We are also working side by side with Mike Sokoloski, our Manager of Grassroots Advocacy to move forward with a plan than combines advocacy efforts of employees and clients together to work toward a personal assistance OLTL rate increase.

Looking forward to hearing your ideas.  Please email me at rhynick@bayada.com.