What Is Respite Care?:
Respite care is, very simply, substitute care. A respite caregiver is a person who takes over when the primary caregiver takes a break. Sometimes the break is just a few minutes or hours and sometimes it's a long as a week or more.
Why Caregivers for People with Autism Need Respite Care:
You need to get to the doctor for your own checkup. You have another child, a spouse or a parent who needs you. You're close to your breaking point, and unable to do a good job of caring for your autistic loved one. You haven't had alone time with yourself or a partner for far too long. Without respite care, you run the risk of losing your health, your relationships, and your sense of humor. Without those critical tools, you'll be no help to your loved one with autism.
Giving Yourself Permission to Take a Break:
It can be hard for some parents to justify taking a break from their child with autism. After all, think many parents, "I should be here for my child and no one else can do the job I do." But, says Dr. Robert Naseef, a psychologist specializing in families with special needs, "This way of thinking is irrational. Taking a break from caregiving, or craving adult time instead of watching the same video for the 47th time has nothing at all to do with love. The more you nurture and give to yourself, the more you will have to give to your family."
Options for Respite Care:
Options vary depending upon your respite needs and the needs of your autistic loved on. If you just need an evening out, it's often possible to call on friends, family, or a competent adult baby sitter. If those people are not available, other options may be accessible through your place of worship, or through your state’s Developmental Disabilities Council or Family Services Agency.
The National Respite Network:
The National Respite Network is a nonprofit dedicated to helping caregivers find competent, trained respite care. Their locator database can give you a good start in the process of finding the right person for you. The site also includes fact sheets and information about respite care.
Funding Respite Care:
Unless you're lucky enough to have friends and family able and willing to look after your autistic loved one, you will have to pay for the service. Many states have Developmental Disabilities Councils, The ARC of the United States, Easter Seals, and other programs that may be helpful. Don't try to use the web exclusively. Instead, give them a call and ask for specific instructions as to how to proceed. You're more likely to get what you want and need when you talk to a human being.
Consider the Possibilities:
When you first seek respite care, you may be envisioning a caring adult coming to your home. But respite comes in many shapes and sizes. If you're flexible, you may find a wider range of possibilities. For example, you may find that a well-run summer camp program is a better option for you and your child than an in-home care provider. You may also find that just a few hours away can make a world of difference to your health and outlook.
Lifespan Respite Care Legislation:
In 2007, the Senate Appropriations Committee passed a bill supporting lifespan respite care. There was, however, no funding attached to that bill. This is obviously bad news for all caregivers of people with disabilities, though the issue is by no means dead. More information about this legislation is available at the National Respite Network website.