Thousands of Oregonians with intellectual and developmental disabilities rely on in-home care services in order to live in the community.
On April 19, Disability Rights Oregon and DHS agreed to a temporary freeze to ongoing cuts to in-home care services while our lawsuit against the agency proceeds. This order, thought not a final fix, is a positive first step.
To bring to life what these services mean for Oregonians across the state, we’re sharing the story of a woman named Khrizma, pronounced Khriz-ma, who relies on these services. She’ll turn 35 in May. Her mother Renee helped share Khrizma’s story.
(Q) Can you tell us about Khrizma? What does she enjoy doing?
The love of Khrizma’s life is music. It’s the reason that she wants to wake up every day in spite of the difficulties she faces.
Even though Khrizma cannot speak, she knows the words to many of Celine Dion’s, Whitney Houston’s and Sandy Patty’s songs as well as many Christmas carols, other songs and poems!
At age two, we discovered that if we stopped and pointed to Khrizma anywhere while singing a song to her, that she would speak the next word to come!
We take Khrizma to Disneyland twice a year and Vegas once a year to attend the Human Nature, oldies, concert where she gets up in the front row and dances with me in front of everyone!
Her favorite person on earth is Drew Tretick, a world class violinist, who performs in Downtown Disney. Khrizma weeps when Drew performs. She will take her 19th trip to see Drew in two weeks.
She experiences both Down Syndrome and Autism. During the first 14 years of her life, she never slept more than two hours a night. She independently speaks only a single word rarely.
(Q) What types of daily activities does Khrizma need help with?
Khrizma needs full support with bathing, dressing, grooming, medications, meal prep and hydration.
Khrizma would not eat if someone did not shop for her food, meal plan, prepare the food, set it at the table, escort her into the kitchen, seat her at the table.
She requires someone to stay close to her while eating so that she won’t eat too quickly and choke. She requires frequent verbal cues to take sips of water.
All of Khrizma’s care providers have to undergo 20-hours of training with myself in order to adequately meet Khrizma’s complex and challenging medical and behavioral needs.
(Q) What kind of in-home care does Khrizma receive?
Khrizma receives 20 hours of paid caregiving support a day because she typically sleeps a minimum of four hours a night, but not always. DHS requires that we provide four hours of natural supports each day to make up the 24-hour care that our daughter requires.
Khrizma’s level of disability requires that someone always be within hearing or visual distance at all times. While out in the community, she requires that someone be within “both” visual and hearing distance, and within arm lengths.
(Q) Were Khrizma’s in-home care hours cut?
Khrizma underwent her annual assessment on April 18, using the version meant to reduce her level of support and services by at least 30 percent. We were told that we would be notified of the reduction this coming Friday.
Then, Judge McShane, ordered his Injunction and halted all reductions, including Khrizma’s, thank goodness!
Should Khrizma’s hours have been reduced by even one hour, we were concerned that we would need to immediately begin a referral to a foster home or 24-hour placement.
(Q) Why is Khrizma’s day-to-day life better because she’s living life the way she is? Why are Khrizma’s neighbors and friends better off?
Khrizma lives a much higher quality of life, health and fulfillment because she lives in her family home surrounded by people who are dedicated to her and love her. Nowhere else would Khrizma receive the level of care and personal attention that she receives in her family home.
We catch the first sign of a side effect from a new medication trial; we understand her non-verbal sounds best so that she doesn’t have to rely on behaviors to communicate.
Community members and neighbors see Khrizma frequently and know her on a first name basis. People light up when they see Khrizma out in her community!
(Q) Are there other benefits to the community of having Khrizma be able to live in her family home?
Should we, at any time, not be able to continue to meet the needs of Khrizma, supporting Khrizma in a small group home would likely be more expensive than caring for her in her home.