Thousands of Oregonians with intellectual or developmental disabilities rely on in-home care services in order to live in the community.
To bring to life what these services mean for Oregonians across the state, we’re sharing people’s stories.
Les Rogers, a father who lives in Roseburg, shares his daughter Gloria’s story. Gloria is three and a half.
(Q) Can you tell us about Gloria? What does she enjoy doing?
Gloria loves music, especially Bruno Mars. She speaks sign language (50 words) and can speak in four word phrases.
She goes to early childhood special education preschool.
She enjoys being read to, and loves the cartoon Super Why about letters and reading.
She loves her caregivers.
She experiences Cerebral Palsy and severe Sensory Processing Disorder from a seizure condition that caused significant brain damage called Infantile Spasms/West Syndrome.
She also experiences an underlying condition called Cardio Facio Cutaneous syndrome.
(Q) What types of daily activities does she need help with?
Most importantly, someone needs to be with Gloria at all times because she needs to be suctioned.
She vomits mucous multiple times a day and is not able to clear it on her own.
It can happen at any time with no notice, and she cannot breathe.
She is also tube fed, and a full assist on all activities, because she cannot stand or walk and has very limited crawling abilities.
(Q) What kind of in-home care does she receive?
Traveling to her therapies, doctors’ appointments, etc. requires the assistance of two people (one to drive and one to suction).
Gloria averages about four appointments a week.
During the first year of Gloria’s life, my wife and I traded off nights to care for her. Given her suction needs, that became dangerous due to our exhaustion.
We feared we would fall asleep while on night duty.
My wife and I still trade off weekends. We both work to provide insurance for Gloria to keep her in the home.
(Q) Were her hours cut?
Our hours were cut by a third in November. Six hours before new plan year was going into effect, DHS said our hours were cut.
We lost all of our day shift nursing to help Gloria get to doctor’s appointments, and part of night shift nurse.
We went back to rotating nights on the nights the nurse couldn’t come.
We had to lay off our Personal Support Workers (PSW) without notice, because we were told only hours before the cuts happened. One of the PSWs was pregnant.
(Q) I understand that your hours were restored before the preliminary injunction went into effect.
For a month, we dealt with cuts to services. They were restored at beginning of January after we filed an exception.
I had to take time off from work, so I could watch Gloria during the nights when the nurse couldn’t be there.
If the situation had persisted I would have lost my job.
(Q) Why is her day-to-day life better because she’s living the way she is? Why are her neighbors and community better off?
Children like Gloria are often institutionalized, or end up in skilled nursing facilities.
Gloria is better off, because she is with her family and supported adequately to be included in her community.
A skilled nursing facility level of care for Gloria would run $182,500.00 annually, which is many multiples of what her cost of care is currently.
Our community is also better off, because Gloria is in it.
Gloria endears herself to others. She is loving and fun.
She is even getting in her gait trainer and attempting T Ball this spring with her sister’s assistance. Gloria helps others understand disability is natural.
She is breaking down barriers in her day care and throughout her community about what level of community inclusion is possible with proper supports.
(Q) Anything else to add?
When functioning properly, the K Plan can provide the necessary level of care to avoid institutionalization, and skilled nursing facility level of care.
We are not focused enough on how much money we are saving compared to the costs and tragedies of institutionalization.
The loss of adequate K plan funding will result in even more children with disabilities entering the foster system, and languishing in hospitals around the state which is unconscionable.