By Terri Otteni, R.N., Care Coordinator, Pediatric Alliance — Northland Division



Think back to when your children were babies, toddlers, and preschoolers. (Many of you don’t have to think back — you are in the midst of that season right now!). Remember the physical demands, the exhaustion. As much as we love our children, most of us realize we need an occasional break: some grown up time, a date night. Although we are grateful for that time of life, most of us find it a bit easier when our children are more independent, not relying on us for every need. But what if that time never came? What if those physical demands were ever-present, day in and day out?

That is what life is like for many folks who take care of loved ones with disabilities, those who are not able to fully manage life by themselves. According to a 2015 report by the National Alliance for Caregiving, in Pennsylvania alone, 1.65 million family caregivers provided 1.5 BILLION hours of care that was valued at 19 billion dollars. Even more startling, and discouraging, 80% of those caregivers do not access respite care. Although there are many reasons why they may not access respite care, perhaps the most looming reasons are lack of resources and inability to pay for respite services.

Living in Pennsylvania does provide an advantage; in 2010, Pennsylvania became a Lifespan Respite State. What that means to caregivers is that with funding grants, innovated partnerships were formed between government agencies and community groups, providing respite care at low or no cost. The initial grants have expired, but it did leave us with a network of government resources paired with community agencies that are able to help find programs and funding so folks can get a much needed break from caregiving.

Here in the greater Pittsburgh area, we are fortunate to have many volunteer and faith-based organizations that either act as a clearing house, matching needs with caregiver services, or provide the actual caregiving.


A few organizations folks can turn to include:

— Pennsylvania Link to Aging and Disability Resources.

Institute on Disabilities (through Temple University’s Western Pennsylvania site) — finds no cost or low cost respite care.

ACRC (Alliance for Community Respite Care) and CLASS (Community Living and Support Services ) — matches a whole host of life enhances services for those with disabilities.


Whether you are a caregiver or know a caregiver — and with those sorts of statistics, there is bound to be someone in your sphere of influence who is — encouraging them to take time out to care for themselves is important.