Home and Community Based Supports: How They Bring Freedom and The Need to Expand Them

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.

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.

The Importance of Transportation for Disabled Peopl.

Ryan Robinson

Meanwhile, on the east side of town, an elderly man named Sam whispers, “I understand,” into the phone as a paratransit dispatcher explains why he’ll be late to dialysis due to issues with driver staffing. Sam doesn’t understand though and he can’t understand why people would play with his life.

       It’s 7:30 a.m. on November 1st in Indianapolis. The driveway outside Henry’s apartment complex where he waits with his guide dog Stanley is full of discarded candy wrappers that are wet from last night’s rain. Henry and Stanley have been waiting outside for an hour. Henry’s screen reader announces, “Your ride share has been cancelled, for the third time that morning as Stanley pulls hard at his harness, agitated from the wait. The  visually impaired executive at the place where Henry has just been hired advised prospective workers to avoid public buses when possible to “project an aura of dependability.” If Henry hadn’t heeded the executive’s advice, Stanley could be with him inside the warm office building right now.

On the westside,  a woman in a motorized wheelchair screams,“I don’t have $30,000 for a van,” at her boss who has just fired her for habitual lateness and indicated she might be able to keep her job if she could just get a lift-equipped vehicle and driver.

 

These scenarios are fictional, but these scenarios happen all the time. The nation’s car-centric mentality and infrastructure, coupled with anti-transit policies at the state and federal levels, have led to public transit agencies that are drastically underfunded, under-staffed, and unsupported. Many cities were drastically expanded in an outward direction after World War II and haven’t been updated since. This has largely meant very wide streets and few, if any sidewalks for pedestrians to get where they need to go. All across America, people with physical disabilities are dismissed from their jobs and late to critical medical appointments every day due to lack of adequate transportation options. The ADA is, in theory, is supposed to protect disabled people from this type of systemic discrimination, but it is clearly still there.

Even though public buses are now required to be accessible for people in wheelchairs, there are often equipment malfunctions, ill-trained drivers, and the afore-mentioned public infrastructure issues that make getting to and from bus stops impossible in some cases. This is where the paratransit system, which is door to door service, is supposed to come in and fill in those gaps. However, most paratransit systems receive their funding the same way as the public bus system, so they face the same short-comings of staffing, as well as route structures that either cause disabled people to ride around on the paratransit buses for hours or not get picked up at all. For example, IndyGo Access, the paratransit system in Indianapolis, reported an on-time performance rating of 74% in July, 2023, according to the August 2023 board report. To the uninitiated, that percentage doesn’t sound too bad, but keep in mind that that’s 26% of people who didn’t make it to their jobs, appointments, and leisure activities. This service is imperative because Uber and Lyft are not possible for everyone. Most cities do not have wheelchair accessible vehicles in their ride-share fleets, and many drivers are hostile towards service animals, often canceling rides without explanation.  This type of discrimination is expressly forbidden in the driver code of conduct, but it still often happens. This is what happened to Henry in our example above.

 

So, the question is, what can we do about this problem? The answer is simple. Public transit needs more funding and more backing on both the state and federal levels. Public transit needs to be seen as a vital part of our cities, not just a service to the poor and disadvantaged. As long as it is seen as a service to the poor and not an important part of our infrastructure, funding for these vital services will continue to fall through the cracks and we will continue to observe the status quo. Our cities need to allocate money and resources to upgrading infrastructure such as sidewalks, curb ramps, and accessible public bus stops, so that more people can use the regular buses and take some of the load off of the over-burdened paratransit systems. There need to be more micro-transit projects started in larger cities, such as accessible shuttles that will take people from outlying areas and drop them off at public bus stops, again making it so that more people can make use of the regular transit system instead of specialized vehicles coming directly to their homes. These are just a few starting points, as there is such a very long way to go to get transportation for disabled people right in this country. The most important thing to do, I believe, is try to get people in office who see these issues as important and worth their attention.

Many people think that it just doesn’t affect them, but it could someday be your mother in that wheelchair waiting in the cold for a bus that will never come, or your daughter who can no longer get a ride in a Lyft because she decided to partner with a dog guide. And even if we were to never interact with a disabled person in our day-to-day lives, we are all going to get old someday, and need a little more help than we do now. Let’s try to build a world where everyone has ready access to enjoy the fullness of their communities.

ABOUT THE AUTHOR: Ryne Robinson

 

My name is Ryne Robinson, and I currently reside in Indianapolis, Indiana. I was born blind due to a genetic eye condition called Leber Congenital Amaurosis. My younger sister shares this condition and is also blind. I attended the Indiana School for the Blind and Visually Impaired from preschool through 12th grade. During this time, I participated in many extracurricular activities including track and field, swimming, and the forensics (speech) team, as well as playing the saxophone in the high school band. During my time at Ball State University, where I attended college, I met my wife, Stacye, who uses a power wheelchair due to cerebral palsy. Life took us in different directions at the time and we reconnected on social media years later, marrying in 2014 and subsequently moving to Indianapolis later that year. We use the city’s public busing system to get around, and for the most part it serves us well. However, there are gaps in coverage as well as service infrequencies that make it challenging to use at times, so I am an advocate for better regional transit for disabled people. We all deserve to get to our jobs, appointments, and recreational activities in a timely and dignified way.

Ryne Robinson
My name is Ryne Robinson, and I currently reside in Indianapolis, Indiana. I was born blind due to a genetic eye condition called Leber Congenital Amaurosis.