Caring for a loved one with autism can be a rewarding experience, but it can also be an emotionally and physically draining one. It’s a 24-hour job that requires patience, dedication, and a lot of love. For primary caregivers, finding time to take care of themselves can be challenging. This is where respite care comes in.
Respite care is a temporary relief service that provides primary caregivers with a much-needed break. It allows them to take time off from their caregiving responsibilities and focus on their own well-being. Whether it’s to run errands, attend to personal matters, or simply take a nap, respite care gives caregivers the opportunity to recharge and refocus.
There are two main types of respite care: in-home and out-of-home services. In-home services are designed to provide assistance to the caregiver while they are still at home. This includes crisis or emergency care, homemaker services, medical care, and personal care.
Out-of-home services, on the other hand, involve taking the individual with autism to a different location for a short period. This can include assisted living facilities, day centers (medical or non-medical), nursing facilities, or crisis or emergency care.
Choosing the right type of respite care will depend on the needs of the caregiver and the individual with autism. In-home services are great for caregivers who need assistance with daily tasks or medical care. Out-of-home services are better suited for those who need a change of scenery or require more specialized care.
The first universal resource to access would be the ARCH National Respite Network and Resource Center. This resource can be found at https://archrespite.org. The main goal is to provide a central place where families and individuals can find information, resources, and assistance. They also serve as a voice of advocacy for respite care.
The site includes the National Respite Locator (https://archrespite.org/respitelocator) which allows families and individuals to search for local respite care services in their own community.
This has a listing of resources that will be covered below as well, in addition to respite care ideas.
The Take Time Texas Searchable Database
On this site, you can search by the zip code, city, or county, the age of the loved one you care for, and the respite type. This is run by The Texas Health and Human Services Commission (HHSC), which provides the list on the site for informational purposes.
This voucher program funds respite vouchers to caregivers so they can pay another person to care for their loved one and take a break from the duties of caregiving.
The requirement for the caregiver is that the person is 18 years of age and is a full-time unpaid caregiver; or is a grandparent or a relative age 54 or younger raising a child as a full-time parent, and they do not receive respite services or payments from other programs. The programs include foster care, Family Support Assistance Payment, OOA Title III-E, or ODMHSAS Systems of Care funding but are not limited to these programs only.
This site allows you to search by funding source (self-pay, Medicaid, Waivers, Scholarships, Free, Veteran Benefits), age, disability, service, and county.
Colorado Family Voucher Program
Colorado’s Title V Program for children with special health care needs: HCP
Colorado’s Early Intervention Program
Parent CNA Program: allows parents to become certified as a CNA to care for their children and receive pay. For more information on that program, see this info from the Department of Public Health.
This program allows parents to be paid to provide personal care services for children in the Children’s HCBS program.
Family Support Services Program
Provides waiver-like services on an as-needed basis to prevent institutionalization or get a child home.
One of the options listed above is for Medicare Waiver Funding. Most persons with disabilities qualify for community and home-based waivers that will cover the cost of respite care. The waiver will either cover the cost upfront or provide you with a reimbursement for out-of-pocket costs that you incur.
Check kidswaivers.org for information about each state’s waivers.
For the general listings and suggestions for respite care, a call or email to the organization would be the first step in the process of setting up respite. In several of the resources listed above, a phone number has been included. In other cases, a more formal application process may be required.
Are you in Texas and looking for a great place to start looking at Medicaid waivers? Check out this website: https://texasmedicaidwaivers.com/. The owner of the page has left a note that as of August 2022, it will no longer be updated, however, there are great resources and information on the site.
There is also at least one self-directed program in each state across the United States, which can be accessed here. These will have links for waivers and other resource assistance if the person who has a disability or chronic condition is eligible for Medicaid. These are also known as cash and counseling, consumer/self-directed, or other names which vary from state to state.
In conclusion, respite care is an essential service for primary caregivers of individuals with autism. It provides much-needed relief and allows caregivers to take care of their own well-being. If you’re a primary caregiver, it’s essential to explore the different types of respite care available to find one that works for you and your loved one. Remember, taking care of yourself is just as important as taking care of your loved one.