Exceptional Children-The Clarke Family's Story
Bill and Patty Clarke are proud parents of five children. Their first child, Christopher, and last child, Jeffrey, were born with multiple disabilities. Both are now in their 50s. Christopher was born with an underdeveloped brain that left him blind, with profound cognitive disabilities, 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 cognitive impairment, but also with cerebral palsy. Neither son matured physically and both use wheelchairs for mobility.
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 homes managed by United Cerebral Palsy of Georgia (UCP) attend the DeKalb County Training Center day program. They are happily living their own lives away from their parents and with other people living 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 anyone had been injured in the showers, and the employees at UCP were shocked to see something like this happen. Jeffrey’s lead DSP, UCP leaders and staff rallied around the situation, examining each water heater regulator in every UCP home throughout the state. UCP replaced 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 lead DSP at Jeffrey’s 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 like family. She has a wonderful ability 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 $10.03 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 program participant's perspective, the high turnover rate prevents the them 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 homes are an absolute necessity for their children, the family and the community. The families with children or relatives in community homes depend on UCP to provide care and services that parents, siblings, and families are not capable of providing. For instance, both Christopher and Jeffrey require assistance getting in and out of bed, going the bathroom, bathing and dressing. When the Clarkes were younger they could manage their sons who did not mature physically. Now, they and other similar parents are not physically able to manage this level of care.
Programs like those at UCP allow the entire family to live a healthier life and assure their adult children will be well cared for.
The plight of people with multiple disabilities 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 people they support and their families. They are committed to providing quality care in spite of the fact that they are overworked, underpaid and under appreciated. They deserve more.
They deserve our attention and increased funding.