Patty has always lived life on her own terms and has never been afraid to share what’s on her mind. In 2014, she even published a book about her journey, The Life of a Late Bloomer. The title says a lot about her vibrant personality and her belief that it is never too late to discover new passions and possibilities.
When Patty moved into a staffed residence in New Hampshire, she made the decision because she recognized she needed some extra support in her daily life. The change did not quiet her spirit. Patty still had plenty she wanted to share with staff, friends, and family. She’s an avid shopper who loves a trip to Hobby Lobby or Walmart. Cooking has become a passion of hers, and she sets a goal of making at least two meals a week, often turning to her crockpot recipe book for inspiration. Chili is one of her favorites to make and takes pride in creating lists and shopping for ingredients.
More than anything, Patty is focused on strengthening her voice as a self-advocate, especially when it comes to communicating her wants and goals. But over time, her ability to communicate has become harder. For someone with such a big personality and so many ideas to express, it’s incredibly frustrating. Imagine having thoughts, jokes, or simply the need to say I’m here and feeling those words stuck inside.
This summer, she had the chance to explore a new way to connect.
Dr. Robert Miller, Aspire’s director of enabling technology, recently received funding from the Aspire Community Giving Fund to build an assistive technology toolkit to introduce people across Aspire to tools that could open new opportunities. As part of introducing the toolkit, Dr. Miller began visiting homes and programs to meet with people and learn more about what might help. When Dr. Miller visited Patty’s home, they sat together and talked about her frustration with communication.
Dr. Miller realized that nothing in the toolkit quite fit what Patty needed. So, he dug deeper. He researched and found a communication device that allowed people to trial it before deciding if it was the right fit.
Together with Dr. Miller and her team, Patty tested the communication device that allowed her to select preloaded phrases with her eyes and the results were immediate. For a little over a month, this tool transformed her days. She lit up knowing that people understood her more easily. She reminded everyone that she was still Patty the author, the later bloomer, the woman with so much life still to share. The joy on her face when she communicated clearly was unmistakable.
Then the trial period ended, and the device had to be returned. Adaptive technology like the one Patty used is expensive, and it isn’t automatically covered under her current waiver. Now Patty and her support team are navigating complicated insurance steps to get her access again, and the process takes time. For Patty, time means hanging in the balance, waiting for the tool that gave her independence and confidence to be returned to her.
Patty’s story is more than one woman’s challenge. Across the country, people with disabilities face the same barriers every day. When funding and access fall short, people are left without the very tools they need to live with dignity, independence, and connection.
This is the reality for so many. And it will not change without you. Raise your voice for stronger Home and Community-Based Services or make a gift that strengthens the supports people depend on. Advocate. Donate. Act. Because no one should be left waiting for their voice to be heard.