PJ's Story: When Disability Supports Become a Lifeline for the Whole Family

When our second child, Pattison (PJ), was born, we had no reason to think she was not going to be a healthy, happy, thriving child.

But after nine months of trying to convince the pediatrician that something wasn’t right, the wave of early intervention, service coordination, physical therapy, occupational therapy, speech therapy, specialty doctors, applications for Medicaid, subsequent waivers, and special educators finally began.

We are grateful because, even with good health insurance through our employers, we were worried we were going to lose our house trying to pay for these things. PJ's specialized formula, therapy, equipment, testing, doctor visits, and feeding tube supplies were more per week than our mortgage.

The stress, the exhaustion, the fear is enough to break your hope, your faith, and your ability to reason unlike anything you can possibly imagine.

Eighteen years later, PJ is still with us. She has spastic quadriplegia, hearing loss, is legally blind, is profoundly intellectually impaired, cannot speak, has seizures, is g-tube fed, needs diapers, and weighs 100 pounds.

In her 18 years, PJ has given me the gift of allowing me to become a better person: probably more patient, more understanding, more forgiving of what others face, but perhaps less tolerant of apathy, bureaucracy, and waste.

PJ smiles when she hears music or is outside and, for the most part, she seems content.

I, however, feel like I have been in a foxhole for 18 years. The bullets might not be flying overhead, but the battles we have faced with funding, special education, in-home nursing, respite, and therapy services have been very real, frightening, and exhausting.

Waiting lists for services are years long. I don’t know of a family in the state who is fully staffed for the respite or nursing hours they have been approved for, and this has been going on for YEARS.

Just training a new person to help care for PJ usually takes me between 10 and 15 hours. For children in school, the stress of summers and holidays increases for families because if they cannot find someone to stay with their child, then someone cannot work.

Home modifications for a bathroom, wheelchairs, and specialized equipment have all taken over two years to complete because of the lack of providers and skilled installers. The amount of hours PJ's service coordinator at PathFinders Team Services has spent on these issues without reimbursement has been insane.

I am grateful for PJ's TEFRA and waiver services because we would not have a roof over our heads otherwise.

BUT the battles, the stress, and the fear of waiting for the other shoe to fall or funding to be cut is always there and takes a heavy toll on a family.

People like PJ and the families who care for them are caught in a no man's land, and what is a disability for a child becomes a handicap for an entire family, with the impact lasting for generations.