Bill and Patty Clarke are proud parents of five children. Their first child, Christopher, and last child, Jeffrey, were born with multiple handicaps. Both are now in their 50s. Christopher was born with an underdeveloped brain that left him blind, profoundly retarded and physically challenged with cerebral palsy. Jeffrey was born with similar but not as severe conditions with vision in one eye and with a lesser degree of mental retardation but also with cerebral palsy. Neither son matured physically so they appear to be about an eight or ten year old boy. Both are wheelchair bound.
The Clarkes cared for both sons for 30 plus years in their home, assisted by their other children, until they realized that eventually they would no longer have the physical capacity to do so. They turned to United Cerebral Palsy of Georgia (UCP) for help.
Christopher and Jeffrey are currently living in separate United Cerebral Palsy of Georgia (UCP) group homes and attend the DeKalb County Training Center day program. They are happily living their own lives away from their parents among other individuals with intellectual and developmental disabilities and their caregivers. They come home twice a month and are visited routinely by the family.
Last April while Jeffrey was showering, the hot water heater temperature regulator failed and he was scalded with extremely hot water which resulted in second and third degree burns on his upper legs. Jeffrey’s caregiver immediately called 911 and the EMT’s took one look at his burns and rushed him directly to the Grady Hospital Burn Center where he received experienced, professional care.
This was the first time a resident had been injured in the showers, and the employees at UCP were shocked to see something like this happen. Jeffrey’s housemother, UCP leaders and staff rallied around the situation, examining each water heater regulator throughout the whole facility and replacing the entire system at Jeffrey’s residence.
The Clarkes credit the fast and effective response by the DSPs at his group home for preventing an even more serious emergency. The DSPs in his home and the central office support team visited Jeffrey while he was in the hospital and then took him back to Grady Hospital for follow-up reviews for several months until he was officially released.
The experienced, veteran DSP caregivers go above and beyond the expected level of care to provide a homelike environment. Frances, the house mother at Jeffrey’s group home, took Jeffrey to New York City on a weekend vacation to expand his horizons. The following summer she took him to Morgan's Wonderland, a 25-acre non-profit accessible theme park in San Antonio, Texas designed to accommodate special needs guests of all ages and abilities. On another occasion, Frances and the DSP team took two group homes to Panama City Beach, Florida to experience the surf and sun.
Recently, Christopher was in the hospital for a minor medical issue and his caregiver Von accompanied him and helped him to better cope with the strange noises and activities. Von has been caring for Christopher for over 20 years and is almost like a second mother. She has a wonderful capability to keep Christopher calm and relaxed. On this visit, Christopher was not happy with the environment so Von wrapped her arms around him and whispered, “What’s bothering you, Christopher? Let’s listen to some music on my phone.” Christopher calmed down and allowed the doctor to continue with the examination.
Von is somewhat of an exception for the typical work experience of a UCP caregiver due to her long and dedicated tenure. She is motivated purely by love and empathy for the clients she serves. A major issue in UCP and many other similar organizations is the ability to attract and hire long term caregivers. The overriding issue facing UCP is the low hourly starting wages that average $9.47 per hour which triggers a high turnover rate.
The lack of government funding, rising costs and reduced state and local budgets has created an emergency level need to re-evaluate the wage structure for caregivers within UCP. From the client’s perspective, the high turnover rate prevents the clients from developing endearing and emotional attachments with their caregivers because they are, in effect, “Here today and gone tomorrow!”
The care and support provided by DSPs is vital in creating a healthy and supportive living environment for the clients and their families and the long term survival of organizations like UCP. If we don’t find ways to raise the wage rates of the caregivers, we will be looking at a bleak future.
The Clarkes state categorically that the UCP group homes are an absolute necessity for their children, the family and the community. The families with children or relatives in group homes depend on UCP to provide care and services that parents, sibilings and families are not capable of providing. For instance, both Christopher and Jeffrey being wheelchair-bound require assistance in getting in and out of bed, going the bathroom, bathing and dressing. When the Clarkes were younger they could man-handle their sons who did not mature physically but still weighed about 100 pounds each. Now they and other similar parents are not physically able to handle their children on their own.
Programs like UCP allow the entire family to live a healthier life and assure their children will be well cared for.
The plight of the multi-handicapped is the reality that they are a distinct minority. The politicians and voters at large do not understand or appreciate the need to care for this unique group and their special needs because they are not personally affected. They tend to be out of sight, out of mind. They are the “Silent Minority” that cries out for attention.
Everyone in the community must share in the support and well-being of those who are not able to care for themselves.
UCP and their team of DSPs and support staff are the last defense for the clients they serve and their families. They are committed to care for the silent minority in spite of the fact that they are overworked, underpaid and underappreciated. They deserve more.
They deserve our attention and increased funding.
What is it like to be the parent of a special needs child?
Bill Clarke, Christopher and Jeffrey’s father penned the poem below as a way to help explain to others the feelings of a parent with a special needs child.
The Exceptional Child
God made him so,
Retarded, blind and palsied.
We ask God why?
We pray for this cross to pass,
We’re left with the pain of lost hopes,
No first steps or roller skates or bikes,
No student of the month,
No touchdown celebrations,
And, no Father & Son on the door,
Just the pain of lost hopes.
Officially, and forever Handicapped.
A word so final, so negative.
Yet our special son has given so much,
To so many.
He has opened hearts and minds
To the precious gift of being whole.
We search for a way.
Then God gives us the word…
Not handicapped, but exceptional.
We are blessed with the gift
Of an Exceptional Child.
Yes, God made him so.