Keys to Community Living

 

 

The grassroots disability rights group ADAPT is headed back to our nation’s capital, Washington, DC this week for the spring 2025 national action.  This year’s theme is keys to community living which are housing, wages, and services, which are so critical for people with disabilities.

ADAPT’s four-decade-long campaign to end the institutional bias in Medicaid for people with disabilities has been a struggle.  Most of the wheelchair accessible low-income housing is in the bad parts of the cities or the worst rural.  Here in Washington, PA, I live in the center of the city with the courthouse a block away.  The local Center for Independent Living, Voices for Independence, is two blocks away.  A full grocery store and a pharmacy are half a block.  Even the Lutheran church that I attend is three blocks from my apartment. There is an accessible fixed-route bus that stops right outside on the street that takes me to Walmart.  When the weather is good, I can be a part of my community, despite the poor sidewalks.

I know people with disabilities in other parts of the country who do not have the luxury that I enjoy.  Even though they are living in the community, they are still isolated.  When I lived in California, PA, I was not able to go where I wanted when I wanted.  I was at the mercy of the bus company, which did two trips a day into Washington and one into Pittsburgh, all in the morning. There were also two trips home in the afternoon.  I would have to hang out at the Center for Independent Living until my mom got off of work.  Once, I was coming home from DC, and I was scheduled on the 3:30 bus back to California.  There was no way I would make that transfer.  We were roughly an hour and a half from our destination and it was quoter after two.  The bus driver had to go out of his way to drop my attendant and me off.  If it were not for that nice bus driver, I would have been stuck in Washington until Friday afternoon.

I am taking the train to Philadelphia next month for Disability Pride Philadelphia, and I plan to do a vlog for my YouTube channel, Kyle Glozier Studios 🌈 🏳️‍🌈♿.  Thankfully, a former attendant and a friend of mine has an accessible transportation service that operates more like an Uber, which I am going to use.  Otherwise, I might not get to the train station on time, depending on how many passengers we have.  Additionally, I am getting back into Pittsburgh late on Sunday, way after the buses stop running, even if the bus were running.  I am thankful we have that option. 

In order to entice good people to the profession of Personal Care Attendant (PCA) or Direct Care Worker (DCW), we should be offering them a living wage and benefits.  Nobody who puts in forty hours a week should be living below the poverty line, but many do.  Being a PCA/DCW takes a lot out of you, and it should be respected.  Too often, the Medicaid reimbursement rates are low, and with a conman who thinks his great-nephew should be dead back in the White House, who knows what disaster things he has planned for Medicaid. Wages for PCAs/DCWs should be at or exceed that of skilled nurses.  Most PCAs/DCWs are required to perform duties that exceed their skill level/pay rate. If it were not for these essential workers during the global pandemic, many people with disabilities would have ended up institutionalized, resulting in their deaths. It is time to treat Attendant/Direct Care like the profession that it is, with a living wage and benefits, and not an entry position.

The last key to community living is having reliable and consistent services. I cannot count the number of times when my mom had to fill in when the direct care agency couldn’t fill the shift.  I get disgusted when this happens.  However, without my mom, my health and safety are at risk. I do not know how many people are forced in nursing homes because of the lack of services.  We should be able to have the care we need to be able to be free!

The keys to community living are housing, wages, and services. How will this new administration and Congress ensure these three keys are fulfilled not only for me but also for thousands of Americans with disabilities so they can live with dignity and independence? It is time for the keys to community living to be given to all.