The Amputee Coalition National Limb Loss Resource Center (NLLRC) serves an average of 966 constituents each month. Every year through the work of the NLLRC and its Informational and Referral programs, we have over 7,500 unique touches to the lives of the limb loss and limb difference community. We have the privilege of speaking to new amputees, family members and friends, care coordinators, social workers, prosthetists and physical therapists. Often our information and referral specialists are some of the first people who are able to represent the Amputee Coalition to new members of our community. Often, we facilitate warm handoffs to other branches of our organization such as Peer Support or Grassroots Advocacy. Sometimes, though, we are able to guide constituents to direct local resources.
In August 2020, I had the opportunity to get to know a family in Ormond Beach, Florida. Marianna Hudson is an 83-year-old mother who is the primary caregiver for her daughter Mary Anne. Mary Anne has a number of health care concerns including a below knee amputation. When Ms. Hudson first contacted the NLLRC, she had been able to find appropriate transportation for her daughter to and from doctor’s appointments and physical therapy. However, she called the NLLRC because they needed a ramp. As Ms. Hudson explained, there was no way for them to get Mary Anne’s wheelchair out of the house without the assistance of multiple people. Ms. Hudson expressed how difficult and discouraging it was to know that there could be a van just outside Mary Anne’s home, but there was no way for her to access it.
This sort of request is not at all uncommon for the NLLRC. Ramps are one of the most common home modifications requests which we receive. Ms. Hudson and Mary Anne had tried to obtain a ramp on their own; they even went so far as to request an assessment from a local company. However, when they received the quote for the price and installation, they were heartbroken. Ms. Hudson said there was no way they could afford the folding ramp that was recommended to them.
One of the resources that we at the NLLRC love to recommend to folks is their local Center for Independent Living (CIL). These organizations are not only focused on peer-led support and navigating the activities of daily life as people living with a disability, but they are also linked up with local resources that can sometimes be difficult to find when searching from a national level. Florida has a robust network of CILs and an easy to navigate digital presence. Following these leads, I was delighted to see that Florida CILs worked closely with Florida’s department of assistive technology (FAAST). Departments of assistive technology (AT) are in each state, and they focus entirely on getting adaptive and assistive technology into the hands of residents in need.
FAAST had digitized their inventory of devices, and I was able to connect Ms. Hudson with a CIL that had a folding ramp that, as luck would have it, fit the professional recommendation they were given. Through the coordination and effort of the CIL staff as well as FAAST professionals, the ramp which Ms. Hudson and Mary Anne needed was shipped directly to Mary Anne’s home. In early September, I received an email from Ms. Hudson.
“My daughter and I want to thank you from the bottom of our hearts for your kindness and finding someone to donate a ramp to us. The ramp arrived today, and she already used it. No one knows the strain it puts on other family members when someone you love is hurting. My thanks again and may God Bless you.”
Not every story has such a happy ending as resources such as CILs and ATs vary drastically from state to state and even county to county. However, Ms. Hudson and Mary Anne’s experience shows that resources and solutions are available.
If you are struggling to find resources, please do not hesitate to reach out to us at the NLLRC. We will do our absolute best to find what is available to you in your area and get you connected to the people and organizations that can help. Give us a call at 888-267-5669, option 1 or fill out our Ask an Information Specialist form at https://www.amputee-coalition.org/limb-loss-resource-center/ask-an-information-specialist-2/.