Raising a child or caring for an adult with autism comes with many joys, but there is no doubt it can be challenging and, at times, exhausting. Many parents put aside their own physical and mental health, partners, friends, hobbies and interests to solely focus on their child. Though it is easy to forget, it is important to keep in mind that to take the best possible care of your loved one with autism, you must take care of yourself. This can often mean taking short breaks to go to your own doctor appointments, go out with your spouse or a friend, rest, or do something just for you.
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Click here to read Caring for the Caregiver, an excerpt from the Autism Speaks 100 Day Kit for Newly Diagnosed Families.
What is respite care?
Respite care is short-term care for a child or adult that allows the primary caregiver relief.
According to National Institute of Health, the respite care definition is “short-term relief for primary caregivers. It can be arranged for just an afternoon or for several days or weeks. Care can be provided at home, in a healthcare facility, or at an adult day center.”
How do I find respite care for autism?
There are a few different avenues of exploration to find respite care for your loved one. The first step is to learn about the types of respite options that may exist in your community such as an in-home or out-of-home model. In addition, respite services can be available to families through provider agencies with trained staff or through a more informal network of support. Find more helpful information about respite models as well as a respite locator from the National Respite Network.
The National Respite Network has also put together a helpful guide: 9 Steps to Respite Care for Family Caregivers of Children and Adults with Intellectual and Developmental Disabilities - A Pathway to Get the Break You Deserve.
Search our Directory for respite care providers near you!
Who pays for respite care or how do I pay for respite care?
If you are unable to afford respite care, there are some funding options you can look into, including your state Developmental Disabilities agency. Care.com has a very helpful article 6 tips for finding funding for respite care costs.
In addition, advocacy work is under way to make respite care more available and affordable to families. The RAISE Family Caregivers Act, signed into law in January 2018, will create a national strategy for supporting caregivers. Respite options for family caregivers will be one piece of the considered strategy and solution.
How do I make sure the provider is right for my family?
When You’re Ready to Interview: Important Information You Need to Know about Your Respite Worker
by Autism Speaks staff member and autism mom Marianne Sullivan
Below are 10 items you will want to discuss with a potential respite worker. Keep in mind when you’re interviewing that the most important step is to observe how the respite worker interacts with the individual with autism and your family. If possible, have the worker spend supervised time with your family member. See how the respite work interacts with your family member with autism, and with other members of your family. Make sure that you feel completely comfortable with the situation. It’s true that it can take a few weeks for respite workers and family members to get to know each other, but don’t let an uncomfortable situation go on and on thinking it will eventually work itself out. We cannot expect every worker to be a match for your family. Sometimes, despite all of your efforts, the worker is not a match. It’s best to move on and find a new respite worker who can provide you with the support you need.
10 items you should discuss with a potential respite worker
- Previous work experience with an individual with autism
- A respite worker does not necessarily have to have previous experience with autism in order for them to succeed at their job. Because individuals with autism are so unique, some families prefer the worker to have no previous experience, so they can teach the respite worker the best ways to interact with the individual with autism. Sometimes if workers have past experience, they want to use strategies that worked with another individual but may not be appropriate or effective for your family member.
- Background Checks
- Examples include DMV record, insurance, criminal history, other certifications such as CPR, First Aid certification, etc. Today many agencies require background checks for workers. If you are receiving services through an agency, ask them to share with you the information they require for employment. Agencies differ on what they require for background checks.
- What does the person know about autism?
- Many workers have misconceptions about what autism is. Often you will hear workers refer to the movie “Rain Man”, but the movie is 22 years old and we know a lot more about autism than we did back then. It might be a good idea to share facts and stories about autism with the potential respite worker.
- Are they willing and able to attend training sessions?
- Many community agencies offer free workshops on autism. Agencies providing the respite services may also offer training. This will vary depending on the agency. It is reasonable to pay your respite worker a lower rate for attending training sessions than for providing actual respite services.
- Safety Issues
- The issue of safety must be discussed with the worker. Safety issues are highly individualized so it is best to document your concerns. See Autism Safety Project Emergency Contact info. More than anything, the worker needs to demonstrate common sense and good judgment based on your family member’s needs.
- Behavioral Concerns
- Behavioral issues such as tantrums, biting, scratching, etc. can be off putting to anyone, so you can expect the worker may have the same reaction. This is an area where the worker will need to be trained by you or a professional. A Behavioral Plan, written by a professional will include an intervention plan. The worker should fully understand their role in managing the specific behaviors of the individual with autism.
- How will the respite worker support the person in a group setting?
- You may want a worker to accompany your family member to a social group, or an afterschool program. The worker will need to be taught the best ways to support your family member in a group situation. You may want the worker to delay intervening, and give the individual an opportunity to respond on their own.
- Do they have concerns about taking this job?
- It is best to know what the worker’s concerns are up front. As much as you might want the situation to work out, if the worker is open and honest about their concerns, it gives you an opportunity to make a decision about whether or not the relationship is going to be a match.
- When is the respite worker available?
- Is their schedule flexible? Let the applicant know exactly what your needs are. It helps if they have some flexibility in their schedule, so you can take a break when you need it the most. For some of us this, may vary week to week.
- Ask for three work references.
- Work references should be employment situations, not personal references. You can ask for personal references as well, but you also want to know about their work habits such as dependability, timeliness, conscientiousness, etc.
For more help and resources, contact the Autism Speaks Autism Response Team at 888-288-4762 or firstname.lastname@example.org.