SUPPORT FOR DIRECT SUPPORT PROVIDERS

by Amy Hibbs and Allison Huffstutler

On March 5th, we attended Disability Advocacy Day at the South Carolina State House and scheduled meetings with our State Senators to advocate for better pay and benefits for direct support providers. Direct support providers support people with disabilities so they can maintain independence and live within their communities.

We want to share with you our personal experiences with direct support providers, the impact these individuals have on the entire family, why advocacy efforts are necessary and how you can also advocate for direct support providers.

Allison’s Story

My daughter, Haley, has qualified for and required support from a direct support provider since 2016. The moment you realize that, as a mother, you are no longer able to sufficiently support and care for your child is unforgettable.

Haley is dependent on others for feeding, hygiene, dressing, bathing, toileting, sensory management and more. In addition, she requires assistance with play and exercise and is dependent on others to do her laundry, make her bed, clean her room and pick up her toys.

When Haley is not at school, she always needs an adult with her. Due to her disability, there are no after school programs willing or able to include her. My husband and I both work plus my husband is in the military reserves (which means he can be gone for days, weeks and even months). Also, I am the parent of two other children. With work and parenting, it would be nearly impossible to adequately support and care for Haley after school.

Haley also needs support outside of home. She has therapy after school and requires transportation to/from therapy and needs someone to oversee and coordinate visits. For Haley's multiple doctor appointments, two adults are needed to accompany her so that one can support Haley and the other can effectively communicate with medical professionals.

The direct support providers that support and care for Haley are invaluable to our family. They are in our home six days a week and see the good, bad and ugly. They are patient and kind and provide us all with a greater quality of life. Each of them become part of our family and we love and value them deeply!

Haley knows that each direct support provider that walks into our home is HER “person” and friend. Although verbal language is challenging, Haley works VERY hard to verbally say the name of HER "person." If they are on vacation or sick, Haley will wait by the door in anticipation of their arrival. When they move on to their next season of life, Haley grieves the loss for many days.

Our family would be at a loss without these women. We are grateful for them and how they provide opportunities for Haley to maintain independence, live in her own home and participate in her own community.

​Amy’s Story

During Occupational Therapy School, I worked for three years as a caregiver for a man in his 40’s who was a quadriplegic. Chuck was paralyzed from the chest down due to a car accident at age 16. Chuck used a power wheelchair for mobility. His parents cared for him for many years but Chuck desired to live in his own home, be independent and work.

My job requirements included making meals, assisting Chuck with grocery shopping, running errands, paying bills, transferring him in and out of bed, bathing, dressing and toileting.

Chuck relied on consistent, reliable, trainable caregivers since he lived alone and was unable to care for himself; however, he often experienced difficulty with both recruiting and retaining caregivers due to low pay and no access to health insurance or benefits. With the help of caregivers, Chuck was able to drive and work independently!

Chuck and I became very close over three years. He taught me more about being a therapist than anything I learned in school. He also prepared me to advocate and care for my own children with disabilities.  Chuck became part of my family and was present at my wedding and graduation from OT school.

Now, I have a caregiver that comes to my home five days a week to care for my son, Caleb. She works a full time job and uses the job as a caregiver to supplement her salary. She receives no insurance or retirement benefits as a caregiver.

Her job requirements include providing assistance with daily living skills (bathing, dressing, grooming and toileting), medication management, meal prep and supporting Caleb in the community (grocery shopping, going out for meals, doing extracurricular activities). She also provides behavior management strategies during all interactions.

Ann is more than a caregiver. She is part of our family and considers my son to be one of her own. She is Caleb’s best friend.

Caregivers are more than just caregivers. They are life changers. They provide someone the opportunity to live in their home, have choice, be independent, direct their own care and provide full-time caregivers opportunities to rest, work, care for other family members and find time for self-care.

Why Do We Need to Advocate for Caregivers (Direct Support Providers)?

When we think about advocacy within the disability community, we usually think about disabled individuals advocating for themselves or allies advocating with and for disabled individuals. We believe advocating for those that support people with disabilities is also needed.

Currently, the turnover rate for direct support providers is 43%! Why? Direct support providers' hourly rate is VERY low, the job does not include health insurance or retirement benefits and the job is challenging.

Due to low pay and lack of benefits, the job can be viewed as a “resume filler” until something better comes along, a “stepping stone” for a job in a hospital, rehab or nursing facility or a “job while in transition.” To bridge the gap in income and to acquire insurance and benefits, most direct support providers must work additional jobs.  

There are also challenges with recruiting caregivers due to the job requirements. Required tasks include, but are not limited to, assistance with toileting, bathing, hygiene, dressing, meal prep and feeding, behavior and medication management, errands, housework, etc. Training can be extensive and require several weeks for both the employer and caregiver to feel comfortable and confident in providing adequate support and care. In addition, it often takes time for the client to feel comfortable with a new caregiver.

Advocating for direct support providers benefits EVERYONE! Direct support providers are needed by people of all ages and essential for our communities to thrive. They support young individuals with disabilities all the way up to aging adults in their final days. Without realizing it, you probably know a person that has been served by a direct support provider (like an aging parent, or a person in a medical crisis or a child with a profound disability).

As the late former First Lady Rosalynn Carter of the US once said, “There are only four kinds of people in the world––those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

Since this is an issue that impacts everyone, tomorrow, we will share some tips on how you can advocate with us for this cause!

How Can You Advocate at the State Level?

Advocacy is needed to share personal stories about the role of direct support providers, address the current rate of pay and access to insurance and benefits, and to offer collaborative solutions.

Advocating at the state level can feel overwhelming but here are some simple steps to get you started.  

• Find your legislators and their contact information using this link: https://www.scstatehouse.gov/legislatorssearch.php, (If you do not live in SC, simply Google "who are my legislators?")
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• Use the contact information from your Google search to send an email or call the office. In your email, include that you are a constituent of the legislator and that you would like to schedule a meeting (video chat or in-person) to discuss and state your specific advocacy issue. Most of the time, if your legislator is not available, an assistant will be able to meet with you.
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• Write out what you plan to say and have at least one other person edit your draft.
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• Use your script to guide you as you speak.
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• Use your story to build the bridge of connection with your legislator. Your story is one of the most powerful tools in your advocacy bag!
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We hope you are inspired to use your voice! Let us know if you do!