A picture of Jamie and Frank. Jamie standing behind Frank - white woman smiling wearing glasses, short brown hair and red shirt and sweater. Frank - white man smiling with short brown hair and blue polo shirt with part of his wheelchair head rest and back showing. They are standing in front of bookcase.

Jamie Ray-Leonetti, Associate Director of Policy at Temple University Institute on Disabilities, and her husband, Frank Leonetti

Like everyone these days, my husband Frank and I spend a lot of time watching and listening to news reports about Covid-19.  We live in Philadelphia Pennsylvania, and as we sit here writing this post, the news is reporting that we have exceeded 5,000 cases of Covid-19 in our city.  Twenty-six additional Philadelphians died of Covid-19 today.  We know that we are supposed to be social distancing.  We know that we shouldn’t have guests in our home.  We know we shouldn’t go outside right now.  We listen, and we know all of this, but what else do we know?

We know that Frank has primary progressive multiple sclerosis.  His immune system is compromised.  He uses a power wheelchair full time.  He needs assistance with daily activities like getting out of bed, showering, dressing and taking medications, just to name a few.  We know that I have cerebral palsy.  It impairs my balance so I cannot give Frank all of the support he needs in his daily life.  But we also know that we are lucky.  We are lucky because Frank qualifies for Home and Community-Based Services (HCBS).  HCBS services are funded by Medicaid waiver dollars.  Because of HCBS, seven days a week, three hundred and sixty-five days a year, regardless of the weather, two wonderful ladies come to our apartment and help Frank.  By helping him, they are also helping me because their presence means that I can go to work each day knowing that he is safe, supported, and enjoying his day.  These are Frank’s personal care attendants (PCAs).  They are professionals in every sense of the word.  But, they make less than $12 an hour.  That’s right.  They could easily go to Target or Walmart and make more, but they don’t.  They care too much to do that.

So here we are in the spring of 2020 and Frank and I are scared.  At first, we were scared because we worried that maybe, just maybe, this Pandemic would be the straw that broke the camel’s back.  Unlike a rainstorm or a snowstorm, we worried that the threat of this virus would be the thing that finally made Frank’s PCA’s call off from their shifts.  After all, we are under a stay at home order, we are supposed to be staying at least 6 feet away from people we don’t live with, so we wondered – would they show up?  On the other hand, if they show up, is it safe to let them in?  Will they bring the virus into our apartment without even knowing it?  But if we don’t let them in, how will Frank get out of bed?  Is it even fair to ask them to leave their homes and families to come to our home?  These are some of the questions that have been keeping us up at night. 

Frank and I don’t know all the answers, but we do know one thing.  His personal care attendants have continued to show up for us, every day since this pandemic began.  They are our heroes.  They are essential professionals, and they deserve to be treated as such.  Their safety matters.  If they aren’t safe, then we cannot be safe either.

Frank and I are not alone.  Over 62,000 people with disabilities in Pennsylvania receive HCBS services under Medicaid waivers.  In the face of Covid-19, here is what we know:

  1.  Many people with disabilities who rely on HCBS services are not getting the care and support they need because of staffing shortages related to the outbreak of this virus.  If a direct support professional, support service professional or personal care attendant becomes infected, they cannot work.
  2. Many DSPs, SSPs and PCA’s do not have access to the personal protective equipment (PPE) such as gloves and masks that they need to stay safe, and to keep those they support safe.
  3. Many DSPs, SSPs and PCA’s feel compelled to come to work even when they don’t feel well, either because they know that there is shortage of qualified staff, or because they don’t have paid sick time, and therefore, cannot afford to stay at home.
  4. On March 27, 2020, the Coronavirus Aid, Relief, and Economic Security Act (CARES) was signed into law. Despite efforts by Senators, including our own Senator Robert P. Casey, CARES does not include needed additional funds for HCBS services.  It does not include hazard pay or paid sick leave for DSPs, SSPs or PCAs.  Without these things, the lives of people with disabilities, and the lives of those who support them are at risk.

While Frank and I remain scared, we are also thankful and hopeful.  We are thankful because Frank’s PCAs continue to show up, and we are all safe and healthy.  We are hopeful because we know that Congress is drafting another Covid-19 relief bill.  In this bill, Congress has the power to make this right.  They can recognize the unsung heroes who are risking their lives to protect the lives of people with disabilities.

Now is the time for people with disabilities to share their stories with Congress.  We need to let our Congressional leaders know that we rely upon HCBS services and the people who provide those services to live the lives we choose.

#WhatWeNeed #OurLivesMatter