Temporary Assistance: Respite Care and Direct Support Professionals
For situations where accommodations can be made, parents of children with disabilities can seek respite care (either in-home or out-of-home) as one option for their child. The National Respite Network has a respite provider locator that can assist parents who wish to take a short time period to recharge and re-energize. The American Psychological Association and individual state Departments of Developmental Disabilities often have additional resources for parents seeking respite care as well. Caregiver.org also provides a family care navigator which can help caregivers for children with disabilities find public and private resources in their state that can help caregivers when needed.
For those able to secure funding (through Medicaid or a state Lifespan program), a direct support professional is also an option. In many cases, there are also private and government-sponsored programs that can assist parents in obtaining home care services and/or personal care assistance. For individuals with severe disabilities, there are also options for care outside the home, such as day programs, group homes and residential care facilities.
Sometimes, parents don’t have the option of respite care or professional assistance; in many cases, they can turn to family or friends to help. Sometimes family and friends can help with some of the tasks of caregiving or daily living, such as running errands, helping with meals, or brief periods of caregiving assistance.
Asking for help from family or friends can be difficult, especially when a parent is used to providing care for their child themselves. One common sentiment is that caregivers ‘don’t want to be a burden,’ but it is important to both parents and children that the parents be able to take some time for themselves in order to continue providing the best care they can. While asking for help is never easy, there are some tips to help make the process more manageable:
- Be upfront with people about how things are going and what you need. Clear communication is the first step to addressing concerns or ways to improve the caregiving situation.
- Involve as many individuals as possible to spread the responsibility.
- Set up a regular schedule for check-in times with a trusted individual; this person can coordinate information and update people you are regularly in contact with who can help.