By Lexi Westerfield
As an individual with multiple physical, psychiatric, and developmental disabilities I rely heavily on home and community based services and supports in my every-day-life to remain as independent as possible and to continue to seek my vision for a good life. Achieving a vision for a good life is what I would hope would be an aspiration for all people with disabilities. whether it be to have a job, be more active in the community, or work on becoming less dependent on family, the right home and community based supports are crucial for success.
I don’t want to go too much further into how much an individual can excel with this kind of care and support without pointing out an important point some people forget about when it comes to home and community based supports. They give and should always give those of us with disabilities freedom. They set us free from institutions or at least they should. They give us choice or at least they should. Look back. I mentioned that vision for a good life. Home and community based services let us have that vision, but it’s just the beginning. It’s important that we expand home and community based services and I will tell you how.
First, it is important that we see a need and meet it. I want to tell you how my home and community based services help me and then how I am hindered
I have done so much with the help of home and community based services. I have attended college, I have lived independently, yet; I have also lived at home with the opportunity to be less dependent on family. I have even had assistance finding resources which lead to my job. I get assistance with my activities of daily living, I get the opportunity to explore the community and do things I enjoy around town, and I get to meet some great people in the process. This may sound like sunshine and rainbows, right? Nope.
I have been hindered. I have missed out on opportunities due to shortages in staff and resources. Low pay, lack of training, and other disparities make staffing difficult for providers. Those factors can also lead to abuse, neglect, and exploitation in more extreme circumstances.
Finding supports that work well for individuals can also be challenging at times. Finding appropriate resources for an individual can also be cumbersome at times. I know this from experience. I have found it difficult to find a Medicaid waiver that is a good fit. What is currently called the Aged and Disabled Waiver was not an appropriate match for me. The Family Supports Waiver, though more of an appropriate fit, limits my resources. With the Community Integration and Habilitation Waiver being an emergency waiver at this time, I am finding it difficult to obtain. I cannot be the only individual experiencing this issue.
Another struggle individuals and families are having is being in the dark about resources. Only 25% of people with IDD in the US receive paid supports. That fact is alarming. I was fortunate to have been made aware of the waivers by medical providers, but many medical providers are not aware. I was also not made aware by my educators when I was approaching transition and I feel that transition is such an important tie to be made aware of these supports.
You may be wondering how we can make waves in home and community based services and supports. It’s all in coming together to use our collective voice. We need to research these issues, talk about these issues, and write about these issues. It’s important to stay tuned, spread the word, and write to our legislators. There are a lot of up and coming changes going on in the coming months and years within the Department of Disability Rehabilitative Services (DDRS) regarding Waiver Redesign so stay informed. . Also, keep your eyes and ears peeled during legislative session.
In conclusion, it is important to recognize the importance of home and community based services and supports and the way they assist people with disabilities, of all types, in working toward their vision of a good life. I gave you some examples of the successes I have had. It is also important to recognize the disparities that effect direct care workers and clients alike which can lead to staffing shortages and, at times, substandard care for individuals with disabilities. Finally, it is important to always be reminding ourselves and each other that we must not sit down and be quiet, but stand strong as advocates and leaders for change.
ABOUT THE AUTHOR: Lexi Westerfield
Lexi Westerfield is a 31-year-old Blind and Autistic self advocate who is also a wheelchair user and is proud to use identity-first language to describe herself. Lexi lives in northwest Indiana in the town of Highland with her mom and two cats Maisy and Meiko. She is a contract employee with The Arc of Indiana and Self advocates of Indiana working on projects such as The Advocacy Leadership Network, Speakers Bureau, and being the Good Life Group Coordinator. She also currently serves on the Board of Directors for Self Advocates of Indiana. In her free time, Lexi enjoys watching 911, listening to a wide variety of music, and spending time in the community.
Image Descrition: Lexi is a white woman with short brown hair. She wears glasses with yellow tinted lenes. She is wearing a pink top, sitting in her power wheelchair, in front of a microphone and a bottle of water. Lexi is smiling broadly.