Living with a family member who needs almost constant supervision and care can create 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 respite programs that offer a set number of respite hours per year per family.
Agencies that provide respite services operate under state guidelines and regulations, but individual agencies have flexibility in the design and implementation of programs. Respite services are primarily funded through Indiana’s Medicaid Waiver program. Some agencies may have other funding options, such as private donations. The amount paid to respite workers will vary 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. Some agencies offer subsidized respite. Some agencies are willing to train family members or friends to provide paid respite support. Respite providers should be contacted directly to clarify options, arrange services, and discuss cost.
To locate respite provider agencies in your area, call The Arc of Indiana, your local Bureau of Developmental Disabilities Services district office, the Autism Society of Indiana, your Medicaid Waiver case manager, or other local groups who work with persons with disabilities and their families. You can also search the Indiana Disability Resource Finder for a host of services. 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 family members 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.
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 family member 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. 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.
The Indiana Resource Center for Autism has a separate article that lists respite provider agencies across Indiana.
View Respite Care Provider Agencies in Indiana
Wheeler, M. and Pratt, C. (2023). Respite Services. Bloomington, IN: Indiana Resource Center for Autism.