There is an Overwhelming Need for Respite Care
Julia’s Story
Although I was only two years old when Katie was born, I remember parts of it.
Before she was born, I fought with my older sister, Ashley, about whether the baby was going to be a boy or a girl. I wanted a little sister. I even told
Mom that I wanted a baby named Katie; I thought it was a very pretty name. When
she was born, I remember going to the hospital and looking at her in her incubator with wires stuck to her. I thought that it was really weird to keep a baby in a box. My
siblings and I sat on the floor and colored for hours while Dad watched over her. I
also remember the day that Katie came home. Mom and Dad parked across the street
and Ashley, Adam, and I all ran to the door. We couldn’t wait to play with
the baby.
Katie is my little sister and I love her very much. She’s the funniest
girl I know and will do almost anything to get you to smile. She loves to watch
movies and play on her computer and dance around to her music, just like any normal teenager.
She’s not a normal teenager, though. I get up with her every morning
to help get her ready for school. I get her dressed; sometimes she’ll tell
me what she wants to wear, but most of the time she lets me pick so that she matches.
I pack her lunch because she says that school food tastes like garbage. I
didn’t pack her anything once for a half day…that was a bad idea. She
lectured me for the rest of the day.
This year, we moved and Katie started going to a public school for the first time.
I worry about her everyday. I went to high school and I know how mean
kids can be. I try to make sure that my parents don’t buy her dorky clothes
or lunch boxes with cartoon characters. I do her hair every morning so that she
doesn’t look like a cockatoo, a punk rocker, or a time traveler from the `60’s.
It’s hard, sometimes, to help out with Katie. I’ve had to
work my schedule around her’s. I couldn’t get a job for a while because
I had to constantly be at home to help with her. I’ve been run over with
her wheelchair countless times; thankfully, my feet appear to be unbreakable. She’s
thrown up on me and wiped food on my shirts. She’s accidentally broken
my necklaces, but when she hugs you as tightly as she can, it’s all worth it.
Yes, she gets annoying when she really wants something. Yes, she bugs
me to play with her all of the time. Yes, we do fight. We’re siblings after all. It’s hard to be away
from her, though. She’s so trusting that she’ll take off with anyone
she’s talked to for five minutes. She’ll take food and drinks from
strangers and pet stray dogs. There are very few people I trust to be alone with
her because it’s difficult to understand her unless you’re with her all the time.
Everyone in my family was worried about sending her to her new school, because her old one was specifically for disabled
children. Mom and Dad have met all of her teachers and Katie is happy there and
doesn’t tell me that anything bad has happened to her, so I worry a little less.
I think that being able to go to a place where you can get a break, but still be with your sibling is a really good
idea. I would never trust anyone to take care of Katie all by themselves. Even at home, it’s not just one person helping her; it’s everyone.
The birth of a child with a disability or chronic illness, or the discovery
that your child has a disability, will have profound effects on your family. When parents learn that their child has a disability
or special health care need, they begin a process of continuous, lifelong adjustment, learning and caregiving. Adjustment
is characterized by periods of stress, and during this time, family members' individual feelings of loss can be overwhelming,
shutting out almost all other feelings. Coping with uncertainty about the child's development may interfere with the parents'
ability to provide support to each other and to other family members. And caregivers are not characterized by the parents
alone, most often siblings or other relatives are tasked with caregiving responsibilities as well. Even when the diagnosis is clear, there are still many uncertainties -- health, programmatic, and financial.
What is clear however is that the 24/7 caregiving that is required for a special needs child takes a toll on all involved.
Raising a child with a disability or chronic illness poses many challenges.
As we struggle to meet these challenges, time off can become a necessity for parents and other family members as well as the
child involved. In recent years, the growth of respite care services and short-term specialized child care has begun to provide
families with some temporary relief.
Research shows that children with developmental disabilities have a better
chance of reaching their potential when they can remain at home. The loving and nurturing atmosphere of the family allows
developmental opportunities that are impossible to build into institutional structures and programs. Parents are increasingly
making the choice to keep their families together. Children with developmental or physical disabilities are no longer routinely
placed in institutional care or secluded away as they once were.
Families caring for a child with medical or physical involvements are
reluctant to allow others to provide care for their child in their own home. The two most common reasons stated by parents
are (1) concerns about the caregiver’s training; and (2) feelings that no one can take care of their child as well as
they can. Babysitters, in general, do not have the skills needed to provide the kind of support required to care for children
with medical or physical disabilities and hiring skilled care providers is financially out of reach for most families.
Respite care programs for families who have children with developmental
and/or physical disabilities provide trained respite care providers for in-home or out-of-home "free" time (respite) for families.
The need for respite care (temporary child care) services continues to increase.
A New Model for Respite Care
Researchers
suggest that professionally focused respite services may be a disincentive to caregiver use of respite. Starkey & Sarli
1989). One solution may be to adopt a more family focused approach to respite that is informed by theory, which will enhance
practice and move it in the direction best able to meet family need.
In
summary, a more successful program approach could be defined by including the following three fundamental conditions:
The existence of an adequate supply of high-quality services that match the number of families needing
them;
Services available to families in a manner that allow access when they are most needed, and facilitates
prevention of further problems; and
Services that are consistent and reliable over time, with families and program staff able to feel
secure that respite care services will be continuously available and not dependent on short-term grants or projects. (Butler
& Friesen 1988, p. 32.)
Our model for a respite care
program is based on family centered care through the construction of facilities within a private recreational community. By
partnering with healthcare, therapists, educators and community resources we will be able to provide a unique respite
experience that will address the needs of the caregivers as well as the individual with the disability. The experience is
not a "free vacation" as are many respite care services, but a resource for rejuvination, care and learning. Participants
will have the opportunity to relax through recreation while learning how to take care of themselves while taking care of their
loved one.
For the full study on the need for respite care
please contact Exceptional People.
