What Is Respite Care Autism

Discover 'what is respite care autism', its benefits, cost, and how it serves as a lifesaver for families.

judah schiller
Judah Schiller
June 4, 2024
Published On
June 4, 2024

Understanding Respite Care for Autism

When caring for an individual with autism, the role of a primary caregiver can be both rewarding and challenging. One resource that can provide immense support to these caregivers is respite care. Here, we will delve into the importance of respite care and the various types available for individuals with autism.

Importance of Respite Care

Respite care for autism is defined as short-term care for a child or adult that allows the primary caregiver relief. It can be arranged for just an afternoon or for several days or weeks, and can be provided at home, in a healthcare facility, or at an adult day center.

This type of care is crucial for primary caregivers, as it allows them to tend to their own needs and avoid burnout. It provides necessary space to recharge and fosters a sustainable situation for both the caregiver and the individual with autism [2].

Without respite care, caregivers may find it difficult to maintain their own health and well-being, which can have a significant impact on their ability to provide care. Thus, understanding what is respite care autism and incorporating it into the care plan is vital for the wellbeing of both the caregiver and the individual with autism.

Types of Respite Care

There are three main types of respite care available for individuals with autism and their families:

  1. In-home respite care: This form of care is provided within the individual's home. It offers a familiar environment for the individual with autism and can be especially beneficial for those who experience anxiety or discomfort in unfamiliar settings.
  2. Community-based respite care: This type of care is provided in a community setting, such as a daycare center or a specialized care facility. It offers opportunities for social interaction and engagement in a variety of activities.
  3. Temporary residential respite care: This form of care is offered in a residential setting, where the individual with autism stays for a short period. It provides an intensive level of support and care.

Each type offers different levels of support and care for those with autism, and the choice depends on the specific needs and preferences of the individual and their family.

Understanding these types of respite care can help caregivers make more informed decisions about the kind of support that would be most beneficial for their unique situation. Regardless of the type chosen, respite care can provide meaningful support and relief for caregivers, ultimately enhancing the overall quality of care provided to the individual with autism.

Cost and Funding for Respite Care

Understanding the financial aspect of respite care for autism is crucial for families considering this service. This section covers the average rates for respite care and introduces various funding options and programs that can help ease the financial burden.

Average Rates for Respite Care

The cost of respite care largely depends on the specific type of care required. For in-home respite care providers for patients with special needs such as ASD, the national average hourly rate is $26. Residential respite facilities, on the other hand, can have daily and weekly rates ranging from $200 to $600. These rates vary depending on the level of care provided and amenities offered.
Type of Care Cost
In-home Respite Care (per hour) $26
Residential Respite Care (per day) $200 - $600

Funding Options and Programs

The cost of respite care can present a considerable financial challenge for many families. Fortunately, there are several funding options and programs available that can help cover these costs.

One such option is Medicare Waiver Funding. Most persons with disabilities qualify for community and home-based waivers that cover the cost of respite care. The waiver can either cover the cost upfront or provide reimbursement for out-of-pocket costs incurred.

State Developmental Disabilities agencies can also provide financial support to families who are unable to afford the cost of respite care independently. These agencies can assist with funding for various respite care options, including in-home services, short-stay overnight care, and more permanent live-in care [4].

Some state programs offer paid hours to caregivers to ensure the child can remain safely at home, recognizing the importance of respite care for autism.

Additionally, the RAISE Family Caregivers Act, signed into law in January 2018, aims to create a national strategy for supporting caregivers, with respite options being one component of the strategy [1].

Knowing what is respite care for autism and how to navigate the financial aspect of it can make a significant difference in a family's ability to access these valuable services.

Accessing Respite Care Services

For families and individuals in need of respite care for autism, there are several resources and services available to provide assistance and support.

National Respite Network Resources

A key source of support is the ARCH National Respite Network and Resource Center. This organization provides a central place where families and individuals can find information, resources, and assistance for respite care. They offer a National Respite Locator to search for local respite care services in the community.

According to ABT Behavioral Analysis & Therapy, families can access respite care services for individuals with autism through resources like the National Respite Network and state-specific respite care programs. The National Respite Network and Resource Center offers a comprehensive online platform, including the "National Respite Locator," to help families find local respite care services for individuals with autism.

Organizations like the National Respite Network also serve as a helpful starting point when looking for respite care. Their resources guide families in navigating respite care options. The "National Respite Locator" tool helps families find local respite care services in their community.

Medicaid Waivers and State Programs

In addition to national resources, state-specific programs and Medicaid waivers can also provide assistance for families seeking respite care services. Funding options for respite care often include looking into state Developmental Disabilities agencies. These agencies can provide financial support to families who are unable to afford the cost of respite care independently.

State agencies can assist with funding for various respite care options, including in-home services, short-stay overnight care, and more permanent live-in care [4].

When it comes to understanding what respite care is for autism, it's important to know the resources available for families and individuals. With the assistance of the National Respite Network and state-specific programs, families can find the support they need to provide the best possible care for their loved ones with autism.

Selecting a Respite Worker

Choosing the right respite worker plays a crucial role in providing the best care for individuals with autism. The selection process should be meticulous and extensive, considering several key aspects to ensure the most suitable match.

Key Considerations

When selecting a respite worker, it is recommended to discuss 10 important items with the potential worker. This discussion can be instrumental in understanding the worker's competence, skill level, and compatibility with the individual with autism. According to Autism Speaks, these items include:

  1. The worker's experience and training in autism care.
  2. Knowledge on how to handle emergency situations.
  3. Familiarity with the specific needs and behaviors of the individual with autism.
  4. Ability to establish and follow a structured routine.
  5. Willingness to engage in the individual's preferred activities.
  6. Understanding of the family's expectations and requirements.
  7. Flexibility in terms of schedule and duties.
  8. Comfort level in handling challenging situations.
  9. References and background checks.
  10. Their communication style and frequency.

These considerations can provide a comprehensive overview of the potential respite worker's capabilities and suitability for the role.

Interaction and Comfort

In addition to the key considerations, observing how the potential respite worker interacts with the individual with autism and the family during the interview process is essential. The worker's attitude, approach, and interaction style can provide significant insights into their potential effectiveness and compatibility with the individual and family dynamics.

It is also important to ensure that the family and individual with autism are completely comfortable with the respite worker. Comfort can contribute significantly to the success of respite care, as it enables smoother transitions, better communication, and a more positive overall experience.

Remember, selecting a respite worker is not solely about qualifications and experience; it's about finding the right fit for the individual with autism and the family. If at any point the family feels unsure or uncomfortable, it's crucial to voice these concerns and consider other options. After all, the primary aim of respite care for autism is to provide relief, support, and improved quality of life for both the individual with autism and their family.

Support and Resources

When exploring what is respite care for autism, it's encouraging to know that there are multiple resources available to support families and caregivers. Two such resources include the Autism Speaks Response Team and the Respite Learning Portal.

Autism Speaks Response Team

The Autism Response Team (ART) at Autism Speaks is a pivotal resource for individuals with autism, their families, and caregivers. This team is available to connect you to information, tools, and resources that can help navigate the journey of autism care. You can contact them at 888-288-4762 or help@autismspeaks.org for any queries or assistance related to autism and its care [1].

Respite Learning Portal

The Respite Learning Portal offers a course specifically designed for individuals providing "hands-on" respite care to individuals with autism. Participants in this course can learn about Autism Spectrum Disorder (ASD) and understand how individuals with ASD experience the world.

Over 3,000 Respite Workers have completed the Online Respite Services Training Certificate offered by the portal. This certificate serves as an orientation and screening tool, with some agencies making it mandatory for their workers [5].

The Respite Learning Portal is provided by SafeGuards Training, a unique training program established in 1995 to meet the specialized training needs of staff serving children, youth, adults, and families in Ontario [5].

For parents, the Respite Learning Portal provides a free online resource called "Respite Workers, Autism and Your Child: A Parent's Module." This resource assists parents in finding a suitable respite worker for their child and provides necessary information to support the child effectively.

These resources play a significant role in supporting families and caregivers in their journey of providing respite care for individuals with autism. They offer information, training, and tools to ensure that the care provided is effective, supportive, and understanding of the unique needs associated with autism.

Benefits of Respite Care for Autism

The benefits of respite care for families living with autism are profound and multifaceted. This short-term relief service provides a significant impact on the mental health of caregivers, the dynamics within the family, and their financial situation.

Improved Mental Health

Respite care serves as a temporary escape for caregivers from the constant demands of looking after individuals with autism, thus reducing stress and burnout. With time to recharge and prioritize their well-being, caregivers can return to their duties with renewed energy and a more positive outlook.

Moreover, studies have shown that participation in respite care services results in improved health for both parents and children, including fewer hospital visits and better management of chronic medical conditions.

For individuals with autism, respite care offers opportunities for socialization, engagement in new experiences, and exposure to different environments. These experiences can contribute positively to their mental and emotional health.

Family Dynamics and Financial Relief

Beyond the individual benefits, respite care for autism also positively impacts the family as a whole. It enhances family dynamics by reducing stress levels and allowing for quality time to be spent together without the constant caregiving responsibilities. Families can engage in activities that may not have been possible without the support of respite care services.

Financially, respite care offers relief to families living with autism. With an average cost of $10-$12 per hour, it is a more affordable option compared to placing children in out-of-home care. This financial ease can significantly reduce the burden on families and allow them to allocate resources to other essential needs.

Understanding these benefits, it is clear why respite care is a valuable service for families living with autism. It is not just a form of temporary relief, but a means to improve mental health, family relationships, and financial stability.


[1]: https://www.autismspeaks.org/respite-care

[2]: https://ondecare.com/home-care/dmv/respite-care-for-autism

[3]: https://behavioral-innovations.com/blog/respite-care-benefits-caregivers-of-individuals-with-autism/

[4]: https://www.goldenstepsaba.com/resources/what-is-respite-care-autism

[5]: https://www.supportyourway.ca/York/respiteservices/respitecourse

[6]: https://behavioral-innovations.com/blog/respite-care-benefits-caregivers-of-individuals-with-autism

[7]: https://www.abtaba.com/blog/power-of-respite-care-autism