More babies are being saved as medical science advances; some severely handicapped children would have died at birth. Low birth weight was a killer in previous years; we are now able to support and save these children. However, some will have persistent, profound handicaps that will challenge families and schools. The costs of support for kids have skyrocketed, but that's not what this article is about.
When a parent is told their child will be profoundly handicapped, where can they go? Parents can be traumatized, as they need to amend the dreams they had for a "normal" child.
The first thing a parent will need to do is grieve. Local churches and spiritual support centers can be valuable during this time. Elisabeth Kubler-Ross has given us a five-stage grieving construct to apply. Denial, anger, bargaining, depression and acceptance are the stages we've come to know. We've all lost someone near to us, and it's always a surprise to me how I walk through each of the stages in order, every time. The stages are not just for death, they are for loss of dreams, too.
Parents come to realize that they are morally obligated to fight for their children. What once was shrill and strident becomes necessary when it's about fighting for the needs of a profoundly handicapped child. I once worked for a non-profit organization in the Western New York area that was designed to help families access respite facilities when they needed a break from the care-giving role. I am always amazed at the grace and humor families share when they describe some of the challenges they face in getting a child off to school every day.
Respite care has been around for a very long time. Many churches have volunteer groups of people who go into homes to provide support for a short time when a parent needs to go out to do errands. Volunteers and in-home health aides need to be trained to make sure the quality of care is appropriate for each individual case. The problem in my job was not finding people who understood the need; it was fighting for resources from the government. I testified before a county legislature to establish some background for their understanding of the enormity of the need for services. Our organization was fighting for funding for a respite care facility to be professionally run and staffed 24/7.
When the concept of respite care was expanded to include the idea of temporary assistance for elder care, the funding began to come through for expanded facilities. Family members caring for Alzheimer's patients in their homes need a break too. Their health is just as important as the patient's, and having reliable respite is a necessity.
There are three basic kinds of respite care. In-home care is the most common, but there are now also Adult Day facilities with sections for handicapped children in afterschool programs. There are also residential facilities for families who may need to travel and can't bring their loved one along.
Profoundly handicapped children may need hospital facilities on a long-term basis. Surgeries have been developed for some conditions to bring mobility and expanded life options.
Medications are being tried for some emotional disabilities that don't sedate the way they once did, but symptom free relief for the child is guaranteed. Therefore, there is reason to hope that one day the pronouncement of a handicap at birth will not be as devastating as it once was.
- State Agencies Addressing Disabilities
- Respite Care Resources
- Ability First
- When Your Baby Has a Birth Defect
Grant Name: Foundation Grants
Funded By: Standard Charitable Foundation
Description: At The Standard, caring about people is a core value reflected in our commitment to the communities across the United States where our employees live and work. We provide corporate philanthropic support to nonprofit organizations working in the following four areas: Healthy Communities, Disability and Empowerment, Cultural Development, and Education and Advancement.
Program Areas: Adult Literacy, After-School, Arts, At-Risk/Character, Community Involvement/Volunteerism, Disabilities, Early Childhood, Family Services, General Education, Health/PE, Homeless, Math, Reading, Safe/Drug Free Schools, Science/Environmental, Social Studies, Special Education, STEM (Science, Technology, Engineering, Math)
Eligibility: Public School, Other
Proposal Deadline: Ongoing
Average Amount: $5,000.00 - $25,000.00
Address: Public Affairs P12B 1100 SW 6th Ave Portland OR 97204
Website: Standard Charitable Foundation
Availability: All States