Part 1: What is Respite Care and How to Find it
What is Respite Care?
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.
How Can You Access Respite Care Across the United States?
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.
Other General Additional Respite Sources to Check on Include:
- State Respite Registries
- State Respite Coalitions
- State Lifespan Respite Programs
- National Family Caregiver Support Program
- Adult Day Care Centers
- Crisis Nurseries List
- Statewide Family Networks
- Checking in with local university's special education and nursing departments to see if some students would like to get some hands-on experience
- The school/teachers or teachers’ aides - you want to check the school's confidentiality agreement or policies regarding any conflict of interest. It is possible that teachers from another classroom may be able to work with your child.
- Word of mouth - connecting with parents of other children to see where they have found resources
- Church and other Faith-based organizations
- Family Services Agencies
- State Developmental Disabilities Council
- City and County Social Services
Resources for Locating Respite Care for Texas, Oklahoma, and Colorado
This has a listing of resources that will be covered below as well, in addition to respite care ideas.
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.
- Medicaid or Other State Programs: When in Texas, call this number: 1-855-937-2372 to see what options are available to you and your family.
- Integral Care: You can go to the website and call the following number: 512.472.4357
- Department of Aging and Disability Services: You can reference this website. You can also call this number 1-855-937-2372 to see what types of payment options are available for assistance in Texas. You can learn about long-term care and short-term options, and talk with a trained professional about options and any questions you may have.
- Texas Health and Human Services: This site has a section for providers, where it looks at community-based long-term services and supports programs. It will do a comparison of the similarities and differences between
- Texas Health and Human Services Commission (HHSC) State Medicaid Plan program
- Medicaid Waiver Program
- Title XX Social Service Block Grant Progam services and eligibility criteria.
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's Title V Program for children with special health care needs: HCP
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.
Provides waiver-like services on an as-needed basis to prevent institutionalization or get a child home.
Part II: Funding Respite Care and Insurance Coverage
Medicare Waiver Funding
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.
Part III: Process to Receive it
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.