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.

South Carolina Families Suffer as Reimbursement Rates Stay Stagnant for Over a Decade

Home care clients like Rashad (right) can stay at home with skilled nursing care, but a lack of state funding is making it more difficult for many South Carolinians
Home care clients like Rashad (right) can stay at home with skilled nursing care, but a lack of state funding is making it more difficult for many South Carolinians

The facts are clear: Home care is less expensive than hospital or other institutional care. Plus, it enables medically complex children and adults to remain at home amongst their loved ones. But because the State of South Carolina has not increased reimbursement rates for skilled nursing home care services since 2008, families are finding it increasingly harder to access the skilled, high quality care that they need to stay as independent as possible in their communities.

State funding for home care has not been increased in more than a decade. At the same time, hospitals and other facilities have been steadily able to increase wages. Even more so, nurses can make more in home care in surrounding states. Now, home care providers find that they can compete for less than a quarter of all the nurses available in South Carolina. When agencies face such recruitment and retention struggles, home care recipients and their families suffer.

When there are less home care nurses available, families find that they experience missed shifts, which can not only create undue stress and chaos as loved ones must miss work, lose out on sleep, and forego other necessary activities—but it also puts the client in danger. For those who need skilled nursing care, missed shifts can mean dangerous consequences, including trips to the ER and unnecessary hospitalizations.

Even more so, many major home care providers have already left South Carolina because of the low funding for home care. Stagnant rates that are more than a decade old make keeping their doors open unsustainable. As more and more agencies leave the state, the harder it is for families to access care. Simply put, if the State does not take action to increase funding for home care, South Carolina’s most medically complex and vulnerable families will have few options for care.

South Carolina’s concerned families are making their voices heard: They are reaching out to their legislators and media to share their message: Increase funding for home health care so that families can access the high quality, reliable care that they need to be where they want to be: At home.

To find out how you can get involved in advocacy, contact us at advocacy@bayada.com today.

Where Does the Money Go? NC State Budget and Bill Tracking Update

State Budget Update

North Carolina is required to balance its budget each year, and health and human services makes up 22.4% of the already tight $24 billion budget

In North Carolina and across BAYADA’s GAO states, our legislative goals tend to revolve around two main tenets: First, achieving policies that streamline processes so that service offices can operate without added burdens and so residents can readily access care, and second, to increase reimbursement rates so that we can recruit and retain the caregivers necessary and ensure that we have the supply necessary to meet the demand.  

It seems like common sense—North Carolinians want to stay in their homes, and home care services cost states less than care delivery in a different setting. So why can’t legislators simply fund home care programs at higher rates? The truth is that there are many competing interests and priorities, and limited amounts of state resources.

It is important to recognize the constraints with which lawmakers must work. Last year, Health & Human Services represented 22.4% of North Carolina’s nearly $24 billion state budget, second only to education, which represented 57.5%. Looking forward to the upcoming budget year, the state’s fiscal research arm reported that top budget pressures include: public schools, higher education, the state health plan, and Medicaid/Health Choice—meaning that there is a lot of pressure on the state’s already tight budget—and that’s not to mention the other interest groups we compete with, such as state nursing homes and other healthcare coalitions.

As GAO continues to garner legislative support for $29.5 million in state funds needed for the Medicaid rate increases we are seeking, advocacy efforts will play an important role. Please watch for ways to support our legislative ask, and please reach out to Mike Sokoloski at msokoloski@bayada.com to learn how you can get involved in advocacy on behalf of your staff and clients.

NC Bills we are following


“I’m just a bill” – Knowing the path by which a bill must travel is important as we follow various bills. 

To date, 824 bills have been filed in the North Carolina General Assembly this session. GAO continues to work through the proposed bills to evaluate their impact on home health care, home care, and hospice. Below are a few bills that are of interest:

1. H70 – Delay NC HealthConnex for Certain Providers, sponsored by Representatives Dobson, Murphy, White, and Lambeth

Home care champion Representative Josh Dobson submitted the bill that extends the deadline by which certain providers, including home care and home health care agencies, must participate in and submit data to the state’s Health Information Exchange Network, NC HealthConnex.  We commend the bill sponsors for this delay.

While participation in and submission to NC HealthConnex is important and necessary in that it grants both the state and providers electronic, timely access to demographic and clinical data, our industry and others provider sectors do not have a consistent platform or an easy way to gather and transmit the required data. Access to this data and clinical information will help the state and providers identify spending trends that will facilitate health care cost containment while also improving health care outcomes only if the data is reliable and consistently reported.

This extended deadline proposed by House Bill 70 grants us additional time to meet the reporting requirements.  We thank all the bill signatories for recognizing the administrative burden and granting additional time to meet the requirement.

The bill passed both the House floor on March 27, 2019 and is headed to the Senate.

2. H745– Medicaid Funding Request for Private Duty Nursing (PDN), sponsored by Representatives White, Lambeth, Adcock, and Cunningham

Our health care members, a home care nurse (White), a hospital administrator (Lambeth), a nurse practitioner (Adcock), and a hospice nurse (Cunningham), introduced H745 to increase the Medicaid funding for nursing under PDN from $39.60 to $45.00 by requesting $4.1M for 2019-2020 and $8.3M for 2020-2021 in recurring state funds.

As health care leaders, they recognize the importance our services play in keeping some of North Carolina’s most clinically complex citizen at home and out of more expensive settings. While the necessary funds were not allocated in the House Budget, we have an opportunity to get it into the Senate Budget and are continuing to advocate for this option.   

3. H728– Increase Innovation Waiver Slots, sponsored by Representatives Insko, Hawkins, and Lambeth

This bill appropriates 500 Innovation Waiver Slots to address the waiting lists. It would support North Carolinians living with intellectual and developmental disabilities (I/DD) and help them receive needed services within their home and community.  The bill proposes to appropriate $5.3M for 2019-2020 and $10,9M for 2020-2021 in recurring funds.

4. S361– Increase Innovation Waiver Slots, sponsored by Representatives Insko, Hawkins, and Lambeth

This proposed bill attempts to address several different health care issues in one bill. This approach makes it challenging to garner support in its entirety.  The bill includes the following provisions:

  • Elimination of Certificate of Need (CON) – Any action that erodes the established process by which a need is determined may lead to destabilizing our health care industry. The established CON process allows for any group to apply for a Special Needs Determination should they feel health care needs are not being met in their community.
  • Establishes a carve-out for PACE organization – Any action that allows a group to be exempt from following Home Care Licensure Rules puts recipients at risk as the organization would not be required to follow health and safety rules outlined state licensure.
  • Medicaid Expansion – Any opportunity for the North Carolina’s working poor to have access to health care coverage, the better. This provision includes a work requirement with exceptions for individuals attending school and or deemed disabled.
  • Addition of Innovation Waiver Slots – Any opportunity for more individuals living with intellectual and development disabilities (I/DD) to have access to needed services, the better.

The introduction of this bill is the first step in a long process. GAO will continue to monitor and support the I/DD slot provision which aligns with our access to care goals. Some of the other items are very controversial because they create a slippery slope on oversight.

To find out what you can do to encourage your legislators to support the introduction of this bill, contact Lee Dobson at ldobson@bayada.com.

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.

Delaware Sets Grassroots Advocacy Records in 2019!

More than 50 home care employees, clients, and family members attended the DE Association for Home and Community Care Legislative Day!

Delaware Ambassadors and employees have set participation records at two key annual advocacy events this year—The Delaware Association for Home and Community Care (DAHCC) Legislative Day and our annual testimony in front of Delaware’s Joint Finance Committee (JFC).

The first, the Delaware Association for Home and Community Care (DAHCC) Legislative Day on March 13, had a record attendance of more than 50 attendees! 41 registered for the event, which would have been a record itself, but the larger-than-expected turnout was an impressive surprise. Seven providers, including BAYADA, were represented, and the crowd included six families advocating for themselves and their nurses. Everyone wore their own company’s branded gear but united behind Hearts for Home Care buttons that proclaimed, “Home Health Care Matters to Me.” Legislators heard our message was heard loud and clear.

BAYADA employees made their voices heard in front of the DE Joint Finance Committee

In another first for Delaware, two legislators spoke in support of a large rate increase for Delaware’s home care RNs and LPNs at the DAHCC Day Press Conference. To make it even better, the two were none other than the Senate Majority Leader, Senator Nicole Poore, and the House Majority Leader, Representative Valerie Longhurst. Both spoke passionately about the importance of home care in our communities and the need to increase reimbursement to ensure that this vital care is available to those who rely on it.  They were joined in speaking by the Executive Director of DAHCC, Jean Mullin, and BAYADA client Haley Shiber.

A week later, on March 20, Delaware advocates broke another record when 15 members of our community testified before the powerful Joint Finance Committee (JFC) in support of increasing Medicaid home care reimbursement rates. Led by Jean Mullin, participants included Torie Carter, Jenny Scott, Mandy Brady, Judeth Smith, Ali Knott, Danielle Myers, Shannon Gahs, Dave Totaroand representatives from Epic/Aveanna and Maxim/Aveanna.  Client Haley Shiber was unable to attend in person but sent a powerful testimony video to the JFC members before the hearing. The Joint Finance Committee hears budget requests from all state agencies and testimony from the public before making an annual budget recommendation to the full General Assembly. The General Assembly frequently follows the majority of those recommendations. Members of the committee told BAYADA in the days following the hearing that they had never before seen such a large contingent testifying on a single issue!

The industry-wide coalition led by BAYADA and DAHCC is pushing the Delaware legislature for a 21% increase in the Medicaid home care RN and LPN rates, which would impact our Skilled Nursing practices—Pediatrics and Adult Nursing. Because of the home care Rate Floor passed two years ago mandating that Medicaid MCOs pay no less than Medicaid fee-for-service, these new higher rates would have to be paid not only for “straight Medicaid” hours but also those funded by managed care in Delaware. These two rates currently remain at their 2006 levels, harming our ability to recruit and retain the highly-skilled RNs and LPNs that are so important to the lives and welfare of our clients.

Thank you to our advocates who turned out and made sure that Delaware’s decision makers know that we are here to advocate on behalf of our staff and clients, and that home care makes a difference in the lives of so many Delawareans!

Legislation Close to our Hearts: NJ Mobility Bill Named after BAYADA Client Mary Montague!

Mom Tara Montague (left) and daughter Mary (center) during a home visit with Asw. Carol Murphy. Asw. Murphy recently introduced “Mary’s Law.”

BAYADA Legislative Champion, Assemblywoman Carol Murphy, recently introduced a bill which will address unequal access to the purchase of modified vans through the Catastrophic illness in Children Relief Fund. The bill is named after BAYADA client Mary Montague. Not only is Mary a client—but the daughter of an employee! Mom Tara Montague works in the Government Affairs Office (GAO) as client and family advocacy manager. Mary and Tara have utilized the fund, and have been important advocates in ensuring the fund is both adequately funded and accessible for the many New Jersey residents that need it.

Currently, families can apply to the Catastrophic Fund to purchase a modified van so that they can safely transport their medically fragile child. However, current regulations require that families pay for the van upfront and wait to be reimbursed by the Fund. This stipulation presents a sincere barrier to transportation for families that cannot afford to front tens of thousands of dollars while they wait to be reimbursed.

Mary’s Law addresses this issue by requiring the Catastrophic Fund to provide direct payments for the purchases of specialized, modified motor vehicles. In addition, this legislation will increase the annual surcharge for New Jersey employers from $1.50 to $3.00 per employee to insure the Catastrophic Fund is adequately funded to meet the its purpose and demands.

“Medically fragile children like Mary deserve to travel safely and freely. This legislation ensures that children and their families receive the help they need regardless of their financial situations. Ever since Mary was born, I’ve been a staunch advocate for her needs and for better laws and policies, but I never thought advocacy could hit so close to home–Mary and our family are ecstatic that we can bring about change for all New Jersey’s children and families that need it,” said Tara.

Thank you to Tara and Mary for continuing to be effective advocates on access to transportation. GAO will continue to provide updates as the legislation progresses through New Jersey committees and chambers.

If you have questions about this legislation or how to get more involved in advocacy at BAYADA on behalf of yourself, a loved one, or your staff and clients, please contact advocacy@bayada.com today.

Home Health Aides’ Low Wages: Turning Public Awareness into Action

Home health aides keep hundreds of thousands of disabled adults and seniors at home and out of costlier settings. Low Medicaid reimbursement rates keep them from making a better wage, and it's up to state governments to address this issue.
Home health aides keep hundreds of thousands of disabled adults and seniors at home and out of costlier settings.

As home care clients, employees, caregivers, and family members, we know one thing for a fact: Home health aides do incredible, compassionate work that enable hundreds of thousands of residents across the country to stay at home and out of costlier, more infectious settings like nursing homes and hospitals. And we certainly know another fact: The work that aides do is invaluable, and it’s time that they begin to receive a fair wage for the hard work they do.

Low aide wages have recently made national headlines and the message is clear: We will need more and more home health aides as America’s population continues to age. But home health care providers are having trouble recruiting and retaining the quality, reliable workforce needed to keep up with the growing demand.

Recently, Hearts for Home Care advocate and BAYADA Home Health Care’s chief government affairs officer, Dave Totaro, submitted his opinion on the matter to STAT News, a media company focused on finding and telling compelling stories about health, medicine, and scientific discovery. He posed the question:

“To say that home health aides’ work is demanding is an understatement. They make it possible for 14 million Americans to stay in their homes and out of expensive and impersonal institutional settings like hospitals and nursing homes. Performing this necessary and in-demand work takes a physical and emotional toll, yet these individuals do it with compassion day in and day out.

So why do we treat home health aides as low-wage, low-value workers?”

The problem lies primarily in states’ low Medicaid funding for home care programs. Though states typically pay an hourly rate for providers who deliver home health aide services, these rates have largely been low for many years, or raised periodically, but at a rate too low to keep up with real costs of living and providing services. Because these rates must cover wages, training, benefits, new hire costs such as background checks and TB shots, and supplies, it is nearly impossible for home health care companies to take such a low rate and provide aides with a wage high enough to compete with industries like fast food and retail.

News coverage of the issue has been effective in bringing greater public awareness to the issue, especially as nearly all individuals will be touched by home care at least once in their lives, whether it be for themselves, a parent, friend, or other loved one. Now is the time to take awareness and turn it into action. Call your state legislator and let them know what home care means to you. Contact advocacy@bayada.com for information on what you can do to share your voice and support home health aides.

Home Health Aides Deserve Better Wages! If Done Right, Mandatory Minimum Wage Increases Will Help

Home health aides provide a lifeline to millions of Americans, but low wages make it difficult to recruit and retain enough to keep up with the demand. If done thoughtfully, mandatory minimum wage increases can help support these valuable workers

It’s undisputable: Home health aides provide a lifeline to millions of Americans that need assistance living where they want to be—at home. But low wages often disincentivize home care workers from staying in the field. The problem lies in Medicaid reimbursement rates: Home health aides rely largely on state-determined Medicaid reimbursement rates for their wages, and those rates have stagnated well below the cost of living—and many states have not addressed this in years.

Luckily, many states have proposed increasing the mandatory minimum wage. And while many businesses often oppose such measures—many home care industry leaders have come out in support of it because they recognize the importance of aides in helping keep people at home and earning a fair wage for doing so. But we must ensure that minimum wage increases are done with the recognition that many home care programs rely on state funding to pay their workers. And if that funding isn’t increased in tandem with mandatory minimum wage increases, the state could unintentionally be putting vulnerable residents at risk.

Simply put, if Medicaid reimbursement rates for home care services are not increased at all, or at a rate too low to cover new minimum wage standards, then many home care providers will need to consider whether they can afford to keep their doors open. If providers do decide that they cannot remain sustainable and do decide to forgo providing Medicaid-based home care services, then the real loser is the millions of Americans that rely on that provider to live independently at home. Down the line, this could result in more people who can live at home with help from a home health aide into being forced into nursing homes.  

“People want to live at home. And it’s the most cost-effective option for states. Home health aides are the backbone of our industry and we absolutely support wage increases for our workforce, but states need to be thoughtful in their approach to protect the many seniors and individuals with disabilities that rely on home and community-based services. We are working with state legislatures to make sure that they understand the relationship between rates and wages, and the potential risk to vulnerable residents who need home care,” says BAYADA Chief Government Affairs Officer Dave Totaro.

So far this year, 18 states have started the year with higher minimum wages than the year before. If you live in a state where the minimum wage is set to increase, then you have a unique opportunity to advocate and tell your legislators about the importance of home care and of paying home health aides a living wage. Contact advocacy@bayada.com to find out ways you can play a role in ensuring that home care is accessible to the many that want to stay at home, and that home care workers continue to be attracted to a field that helps them do just that.

Using Social Media as an Advocacy Tool

Every day, BAYADA employees, clients, and families use social media to connect with one another, keep in touch with distant friends and relatives, and learn about news and events near and far. But social media has evolved far past the traditional definition of “social.” In today’s world, social media gives the home care community the opportunity to spread public awareness about home care’s impact and the opportunity to more conveniently advocate for better home care laws and policies.

Advocacy simply means communicating to elected officials what home care means to you and how it impacts your everyday life. Because our state and federal lawmakers make decisions that affect home care providers’ ability to recruit and retain quality caregivers to serve our clients and their families, it is important that they are able to connect home care to their constituents’ names and faces. Social media outlets, particularly Facebook and Twitter, allow for members of the home care community to advocate from the convenience of their home or office.

Sharing a video of a family expressing the value that their in-home nurse or aide brings to them and their loved ones, for example, enables other social media users to understand how home care impacts them, their neighbors, and thousands of people across the country. Our Hearts for Home Care platform is designed to share videos, quotes, photos, news, and advocacy opportunities with elected officials and the community at-large.

In addition to this platform, it’s important that members of the home care community—including staff, clients, and family members—are aware of the power they hold at their own fingertips. Getting involved in advocacy through social media is easy, and the more we share our voices the better we can be heard. In addition to following our Facebook and Twitter, you can tell your elected officials what home care means to you in three easy steps:

  1. Find your elected officials on Hearts for Home Care’s Find My Legislators page
  2. Like and follow them on social media (the links are right on the page!)
  3. Connect with them regularly: Share Hearts for Home Care’s posts with your legislators, post on their pages about what home care means to you, or message them to ask them about meeting them in-person to talk about the value of home care. You’ll find that their pages will also give you information about news and events like Senior Expos and Town Halls that may be valuable for you, your staff, or your clients.

Social media not only brings people who value home health care together, but it shows those who have not yet needed home health care its value and necessity. It gives our industry a face and a voice and allow our representatives and senators to see that it affects real people in their communities, and it shows our elected officials that our friends and neighbors with special medical needs should be able to receive the care they need in the place the feel the safest and most comfortable–at home. To learn more about how you can be a voice for home care, join Hearts for Home Care today.

Advocate Spotlight: Mark Steidl acts as a voice for those without one–through his Dynavox communication device

Relying on a communication device to speak does not stop Mark from being a fierce advocate for disability rights and for the many individuals across the US that, like him, rely on in-home caregivers.

Pictured: Disability rights advocate Mark Steidl (center) joins the Pennsylvania Homecare Association's Advocacy Day in Harrisburg to tell legislators about what home care means to him. He is pictured here with BAYADA Home Health Care Associate Kimberly Gardner (left) and CEO David Baiada (right).
Pictured: Disability rights advocate Mark Steidl (center) joins the Pennsylvania Homecare Association’s Advocacy Day in Harrisburg to tell legislators about what home care means to him. He is pictured here with BAYADA Home Health Care Associate Kimberly Gardner (left) and CEO David Baiada (right).

 

On May 22, Mark Steidl and his mother Tina joined hundreds of Hearts for Home Care advocates in Harrisburg, PA to express to legislators the importance of home care and of its impact on the thousands of Pennsylvanians that are able to remain safely at home with their families due to in-home services.

Harrisburg isn’t Mark’s first time joining with others to advocate for better policies. In addition to his participation in the Pennsylvania Homecare Association’s (PHA) Advocacy Day, Mark currently actively advocates on behalf of the National Council on Independent Living and the United Way of Southwestern Pennsylvania’s “21 and Able project.

Not only is Mark an advocate, but his goal is to complete his Associate’s Degree in Social Work coursework, go on to obtain his bachelor’s degree, and eventually serve in a case management position so that he can continue to help others with disabilities. Mark, who is 23 and diagnosed with Cerebral Palsy, uses a Dynavox to communicate. Mark operates the device by using the switches that are affixed to his wheelchair at either side of his head. The Dynavox allows Mark to type out what he wants to say, and then the device’s speakers enable Mark to communicate out loud.

During their time in the state capitol, Mark and his mother met with Senator Jay Costa, Representative Paul Costa, and Representative Ed Gainey, who represents Mark’s district in the Pennsylvania House of Representatives. To prepare for the day, Mark used his Dynavox to create a message that he would share with each legislator. Mark found it important to not only advocate for himself, but for his caregivers. In addition to advocating for three key issues that PHA outlined as legislative priorities for the home care industry in Pennsylvania, Mark’s speech included the following:

At home and in the community, I have personal care assistants who help me with various physical things. These assistants are very important to me, as they are to any person who needs one-on-one help, whether people with disability or older people. These aides enable us to live at home and avoid having to go to nursing homes.

“I am advocating today on behalf of home care providers who make it possible for us to have high-quality homecare services… When I think of my priorities as an individual with a disability, my first priority is my health and how it affects my life. But helping people maintain good health should also a priority for society.

I am pleased to be here today because you make decisions that affect people with disabilities and older adults. You have the power to create positive change and to enable people to live good lives!”

When Hearts for Home Care asked Mark to tell us why he advocates, Mark used his Dynavox to tell us:

“I consider myself an advocate for myself and for other people with disabilities. My disability is visible, and many people are likely to underestimate me and not see the person that I am. I have to challenge society’s perception each and every day.

I have to tell people when I first meet them why I use a wheelchair and communication device to talk. I have to explain cerebral palsy. People often wonder how I do school work without the use of my hands, so I have to explain that also.

All of us with disabilities have abilities and accomplishments, but we have to advocate for ourselves in order to create our place in the world.

The efforts of many dynamic leaders, innovators and activists affect our lives every day. The things I do every day would have been impossible 30 or 40 years ago. Before the changes in education laws that occurred in the 1970s, I would have been considered too disabled to attend public school, let alone Community College of Allegheny County. Thirty years ago – before the advent of electronic communication devices, I would not have been able to communicate with you. If I had been born in 1965 instead of 1995, my parents might have been told to send me to an institution instead of raising me at home with all the support I need. Times have really changed. Advocacy and new ways of thinking have created those changes.

But much more needs to be done and much more can be done. We have to keep advocating for the changes and the opportunities we want.”

Mark is an inspiration to many of his peers, and to many who understand the importance of sharing their voice on behalf of others. For ways you can advocate for yourself, your loved ones, and your community at-large, please email advocacy@bayada.com