Janeen

Janeen lives in Warminster, PA with her husband and adorable dog, Rio. She relies on the Medicaid waiver program to live at home independently and with dignity. Now, Congress is rushing to make cuts that theaten that stability for Janeen and hundreds of thousands of other people with disabilities across our state. Here's her story:

I was 48 years old when my doctors decided a tracheostomy was the only way they could secure my airway.  Before that, I had been intubated twenty times because of laryngeal spasms, seizures, and repeated episodes of pneumonia and bronchitis.  I had to stop working the year before. 

Now in my mid-fifties, my medical conditions have gotten more complex.  Along with the trach, I use supplemental oxygen 24/7 and a ventilator overnight.  I take 62 pills on a normal day.  Because of an immunodeficiency disease, I get an infusion from a nurse every three weeks that helps my immune system fight infections.  And I use a power wheelchair. 

Despite all of this, I live in my own home.   My husband works two jobs, one during the day and one overnight, in order to pay our bills.  Our kids are grown.  It is my caregivers through the Medicaid waiver who help me get dressed, take a shower, and even go to the bathroom.  It is my caregivers who help take me to all my doctor’s appointments, and who know how to respond if I have an asthma episode or an esophageal attack. 

I’ve experienced the nightmare of being ignored in a rehab facility.  Of having a massive respiratory attack and having facility staff ignore my call bell.  I will never go back.  I depend on my caregivers every day, but the Medicaid waiver at least gives me the dignity of living in my home.  It gives me the dignity of being able to go outside for fresh air, to live with my husband, and to attend my son’s wedding in the fall. 

If someone told me that my Medicaid services would end or be cut back, I would plead, 'Do not take this away from me.  Until you’ve sat in my wheelchair, until you’ve seen what it’s like to be dependent every day on somebody, don’t tell me I’m not worthy.'