All parents need time away from their children. This may be especially true for the family of an individual with a disability. Living with a family member who needs almost constant supervision and care can create continual stress. Respite services provide families with temporary relief from the sometimes 24 hour a day job of supervising and supporting a person with a disability. Respite is an option for any child, adolescent, or adult with disabilities.
Depending upon programs in your area, respite may be available for several hours a week on a routine basis, occasionally overnight, or for several days or more at a time. Respite services provide temporary relief and peace of mind by placing the family member with a disability in capable hands. If a family and the individual with the disability qualify, there are funding programs for respite that offer a set number of respite hours per year per family.
Respite services may provide the following:
- Individual care in the family home or the home of the respite care worker, as arranged.
- A short-term stay in a group home, family home, or other residential setting.
- Assistance to attend a camp or day program in the summer.
Agencies that provide respite services operate under state guidelines and regulations, but individual agencies have flexibility in the design and implementation of programs. Respite workers can sometimes be paid between $8.00-$18.00 an hour depending on the level of assistance required for the individual, and the skill level required of the respite worker. Most agencies providing respite services set fees according to a sliding fee scale based on a family’s income. Agencies also can direct families to funding sources to defray costs. Many agencies can offer subsidized respite that is very affordable. Respite providers should be contacted directly to clarify options, arrange services, and discuss cost.
To locate respite provider agencies in your area, call the local Arc or the local Bureau of Developmental Disabilities Services district office, Autism Society of Indiana, local parent support groups, the local special education planning district, or other local groups who work with persons with disabilities and their families. Many agency respite staff coordinators work part time. Therefore, it may be hard to reach certain respite contact staff on the first phone call. However, once you leave a message, contact staff is usually good about returning phone calls.
Often respite services are not used because parents are not aware of programs or because they feel guilty or anxious about using services. At times, respite provider agencies lack personnel trained to deal with individuals with significant disabilities or with challenging behaviors. These are valid concerns, but hopefully will not prevent a family from seeking or receiving respite services. Agencies are required to train respite staff. Most agencies try to provide advanced training to respite workers who are interested in and capable of working with persons with the most severe disabilities and/or challenging behaviors.
One option for families may be to find an individual who is interested and capable of providing respite such as a supportive neighbor or a college student studying to be a therapist and suggest for them to apply to be respite staff with the local agency’s respite program. The agency will likely require a background check and other paperwork plus successful participation in some mandatory training. Once on staff at the agency, the family has a respite worker that they likely feel an extra level of comfort in using.
When using respite services, it is important for families to provide specific information about their family member with a disability to agency staff. Maintaining a notebook with information about the individual’s method of communication, areas of concern, preferred activities, systems of reinforcement, medications, behavior support plans, suggestions for interactions, and a daily schedule can be helpful. Information about dressing, eating, bathroom use, and bedtime routines should be documented and readily available. Emergency numbers and emergency procedures should be clearly posted. Visual systems of support such as picture sequences, calendars, and checklists should be easy for the respite worker to access. Keeping updated information in one location will help the respite worker be successful, ease your peace of mind, and assist your son/daughter in adjusting to a new person.
Time for running errands, relaxing, pursuing other interests, and strengthening relationships with family members and friends is essential for all parents. Respite services can provide relief and can help all family members feel energized, including the person with a disability who spends time with trained personnel. Consider the benefits to the whole family. Be persistent in finding and working with an agency in developing respite services that meet your family’s needs. Respite services can truly enhance the lives of all family members.
Wheeler, M. (2009). Respite Services. Bloomington, IN: Indiana Resource Center for Autism.