Our Country is heading towards a Healthcare Crisis.

 Probably sleep deprivation is the unifying force behind us moms of kids with special needs. My son Benjamin is 25 years old now and it’s been a ride. From the initial shock and shattering of the world as my husband and I thought we knew it; to the immersion into a new world of doctors, specialists, visiting nurses, therapists, special educators, insurance and equipment providers…the list is endless. Every parent of a child with special needs receives a crash course in administrative and time management while at the same time meeting the minute to minute needs of a child whose very existence depends on you.

While living on the edge defined our first 12 years…life has settled and life is good. We are a family of five that is thriving and is happy. But the one constant challenge has been the lack of respite and the absence of any outside caregiving assistance. We tried and tried and tried through the years to find good people to give us a break. The home health agency said if we could find a person they would train and pay them. That worked with very limited success as the training was onerous and not relevant to Benjamin’s needs and the pay was so low. Benjamin’s sister got trained as a direct service provider so I could go back to school. She was paid $12.95 an hour. She did it out of love...

I thought when Covid hit and the entire world joined us in isolation that things would change. The world was cheering in support of essential workers. But no, the world has returned to its oblivion. There are an estimated 56 million family caregivers in the United States. A few are like me, caring for an adult child with profound disabilities. But most are family caregivers for aging parents. And others will age into disability and need a caregiver. We will all be impacted.

My family had a crisis event 25 years ago. We have managed. Because we have no choice and love has kept us together. But our country is headed toward a crisis in care. There’s so much more I could say but this is a bit of our story. Thank you for reading. Thank you for caring. But mostly, thank you to the direct care workers that continue to do this work.

Karen and Benjamin Roberts

Denver