Real-life Examples of Home and Community-Based Services for Autism

11 Jan 2022
Explore empowering examples of home and community-based services for autism and their impact on families.

Home and Community-Based Services Overview

Families with children diagnosed with autism often require additional support to manage daily activities and healthcare needs. Home and community-based services (HCBS) can play a pivotal role in this scenario. This section provides an overview of what these services entail, their importance, and information related to coverage and eligibility.

Definition and Importance

Home and community-based services (HCBS) encompass a range of medical, personal care, and social services. These resources are designed to assist older adults, individuals with disabilities, and those with chronic health conditions, including autism. The primary objective of HCBS is to enable individuals to remain in their homes or communities, avoiding the need for institutional care.

HCBS have evolved to become the primary delivery model for long-term care in the United States. As far back as 2013, Medicaid spending on HCBS exceeded spending on institutional care. This shift was primarily due to concerted efforts by advocates, policymakers, and providers to increase access to HCBS.

Coverage and Eligibility

Medicaid is a key player in providing coverage for both institutional care and HCBS. In 2020, Medicaid accounted for 54% of the $402 billion spent on long-term services and supports, and for 57% of national spending on HCBS [1].

Under federal Medicaid regulations, coverage of nursing facilities is mandatory, while coverage of most HCBS is optional. This leads to substantial variation across states and territories in terms of eligibility for HCBS, covered benefits, and federal pathways.

Medicaid HCBS are typically delivered through a combination of state plan authorities and waiver authorities. This structure allows states and territories to tailor HCBS services to suit local needs, policy priorities, and the state fiscal landscape.

In fiscal year 2016, Medicaid programs spent approximately $95 billion on Home- and Community-Based Services (HCBS) compared to about $67.1 billion on institutional services.

This shift in Medicaid spending from institutional to home- and community-based settings is known as rebalancing. It has been driven by concerns about the high cost of institutional care and by the preferences of beneficiaries to live in the community. Efforts to aid this shift have included the Money Follows the Person (MFP) demonstration program, initiated by the Deficit Reduction Act of 2005 with funding extended until 2023.

The MFP demonstration program provides grants to participating states to help beneficiaries transition from living in institutions back to the community. States can retain unused funds for up to four fiscal years, with FY 2023 awards available until FY 2027.

Understanding the definition, importance, coverage, and eligibility of home and community-based services is essential for families seeking support for a loved one with autism. The role these services play can significantly influence the quality of life and independence of individuals with autism.

Types of Home-Based Services

Home and community-based services (HCBS) provide a wide array of support to families dealing with autism. Among these, home-based services are an integral part of the HCBS framework. These services are designed to cater to the unique needs of individuals living with autism, enabling them to live as independently as possible in their own homes. The following sections detail three key types of home-based services: skilled health services, personal care services, and housing support services.

Skilled Health Services

Skilled health services are specialized services provided by trained professionals such as occupational therapists, social workers, and home health nurses. These services include physical therapy, injections, ostomy care, and specialized wound care. In certain cases, hospice care can also be provided at home [3].

These services are designed to manage, observe, and evaluate care plans tailored to meet the individual's health needs. The goal is to provide medical support to individuals with autism and enhance their quality of life at home.

Personal Care Services

Personal care services aim to assist individuals with activities of daily living such as dressing, bathing, and meal preparation. They are provided by home health aides who can offer support ranging from a few hours a day to around-the-clock live-in care (HelpGuide)

This type of home-based service is particularly beneficial for individuals who struggle with self-care tasks due to physical or cognitive impairments. Providing personal care assistance helps maintain personal hygiene, nutrition, mobility, and overall wellness, thereby promoting a sense of independence and dignity.

Housing Support Services

Housing support services are designed to make the living environment of individuals with autism safe and comfortable. These services include household maintenance, transportation, home modifications (such as installing grab bars and ramps), and day programs [4].

Additional services can include laundry, shopping, gardening, housekeeping, and handyman services. These services help individuals live independently in their homes for longer, providing them with the comfort and stability of familiar surroundings.

In conclusion, home-based services provide vital support to individuals with autism and their families, promoting independence, comfort, and quality of life. By tailoring these services to the unique needs of each individual, they can make a significant difference in the lives of those affected by autism.

Community-Based Programs

In addition to home-based services, community-based programs play a critical role in supporting individuals with autism and their families. These programs provide a range of services that address various needs, from mental health to homelessness, and cater to specific populations such as the Indigenous communities. Here are some examples of community-based services that could benefit families dealing with autism.

Mental Health Services

Community-based mental health care programs primarily delivered by community agencies offer support to the most vulnerable and severely mentally ill individuals, including those diagnosed with autism. These programs cater to individuals who have faced complex life challenges such as poverty, homelessness, involvement in violent relationships, child abuse, victimization through assault, institutionalization, physical illness, and legal troubles.

In these programs, case managers work closely with individuals to help them access medical care, acquire new skills, find jobs, make friends, overcome addictions, and prevent hospitalization. They may also offer counseling and provide support in various settings like apartments or coffee shops.

Community mental health agencies also provide crisis services that assess immediate circumstances, offer short-term counseling, provide medication prescriptions, and facilitate hospitalization if necessary. There are also mobile crisis services that operate 24 hours a day, offering immediate care where required.

Homelessness Programs

Community-based programs also address the needs of individuals experiencing homelessness and mental health issues, including those with autism. These services include housing services like group homes, supported housing, and safe houses. Additionally, they offer case management, psychiatric treatment, peer support programs, crisis services, mobile crisis services, court diversion programs, clubhouses, employment services, and other programs tailored to the community's needs.

One notable aspect of these services is the court diversion programs, which help individuals with mental illness who have committed minor offenses access necessary help outside the judicial system. These programs reduce court costs and offer more effective mental health support than traditional corrections systems.

Indigenous-Specific Services

Autism support within Indigenous communities often requires culturally sensitive approaches. While specific details on these services vary, it's important to seek out programs that respect and incorporate Indigenous practices and values. These programs may involve community elders, use traditional healing methods, and ensure that their services are accessible to Indigenous families dealing with autism.

Overall, community-based programs offer a wide range of services that can provide significant support to individuals with autism and their families. By understanding and leveraging these resources, families can navigate the challenges of autism more effectively.

Examples of Home and Community Care

A closer look at real-world examples of home and community-based services (HCBS) across different regions can offer valuable insights into the available support systems for families dealing with autism. This section will explore these services in Ontario, under Medicaid, and the resources provided by the Substance Abuse and Mental Health Services Administration (SAMHSA).

Ontario's Support Services

In Ontario, home and community care services cater to individuals of all ages who require care at home, school, or within the community. This assistance helps seniors and people with complex medical conditions to remain in their own homes with appropriate support. Home and Community Care Support Services organizations in Ontario are responsible for assessing care needs, determining eligibility for services, and developing a care plan for eligible individuals. They also provide information and referrals to other health and social service providers.

Ontario offers a program of Family-managed home care or self-directed care providing individuals with home care needs greater flexibility by providing funding to pay for home care services from a chosen provider. This program is designed for select groups with specific care needs.

The Ontario government pays for home care services for those who qualify, covering a range of services including personal support services and homemaking. Additionally, there is an option to pay for care through private companies.

Medicaid's HCBS Coverage

In the United States, Medicaid covers both institutional care and HCBS. In 2020, Medicaid paid for 54% of the $402 billion spent on long-term services and supports, and for 57% of national spending on HCBS.

HCBS have become the primary delivery model for long-term care in the United States. In 2013, Medicaid spending on HCBS exceeded spending on institutional care. This shift was the result of sustained efforts by advocates, policymakers, and providers to increase access to HCBS.

States and territories can tailor HCBS services to local need, policy priorities, and the state fiscal landscape by using different federal pathways. In fiscal year 2016, Medicaid programs spent approximately $95 billion on HCBS compared to about $67.1 billion on institutional services, indicating a 10 percent increase in HCBS spending over FY 2015 [2].

SAMHSA's Resources

SAMHSA, the Substance Abuse and Mental Health Services Administration, offers a variety of resources and supports for autistic individuals and their families. These services range from providing information and guidance on various treatment options to facilitating access to community-based programs and services. SAMHSA also funds numerous grants and initiatives aimed at enhancing the quality of life for individuals with autism and their families, with a particular focus on improving access to effective treatments and supports.

These examples illustrate the diversity and availability of home and community-based services that can be utilized to support families dealing with autism. As the landscape of care continues to evolve, families and caregivers can expect to see an increasing emphasis on providing high-quality, personalized care in the comfort and familiarity of home and community settings.

Challenges and Solutions

While home and community-based services play an instrumental role in the lives of individuals with autism, there are significant challenges that need addressing to improve these services. Two key issues are the long waiting lists for these services and the need for a dedicated direct support workforce.

Waiting Lists and Funding

Currently, there are over 500,000 people with disabilities on waiting lists for home and community-based long-term services and supports. The wait can be as long as 8-10 years in some states, resulting in unnecessary, unwanted, and costly institutional care.

Medicaid is overwhelmingly the largest source of funding for long-term supports and services for persons with disabilities. However, individuals who want to receive their long-term supports and services in community settings are not entitled to home and community-based services (HCBS). States have the option, but are not required, to fund HCBS programs, leading to waiting lists and an unknown number of individuals not even on the radar of the service delivery system [7].

This current system of delivering long-term supports and services for people with intellectual and developmental disabilities is a patchwork of inadequate funding, with most federal funds provided by the Medicaid program. This system has a bias toward institutional settings rather than in the community [7].

One solution to address this challenge is for the federal government to take the lead in developing a coordinated, comprehensive approach to long-term supports and services. This approach should aim to meet the needs of people with intellectual and developmental disabilities in a person-centered manner [7].

Direct Support Workforce

A well-trained, fairly compensated direct support professional workforce is essential to providing the necessary supports and services to individuals with intellectual and developmental disabilities where they live and work.

This dedicated workforce is vital to ensuring that individuals with autism receive the necessary care and support in their homes and communities. However, attracting and retaining skilled professionals in this field can be challenging due to low wages and the demanding nature of the work.

One potential solution to this challenge is to provide competitive compensation and benefits packages to direct support professionals. This can help to attract qualified individuals to the field and encourage them to stay for the long term.

Investing in ongoing training and professional development opportunities can also help to improve the quality of care provided by these professionals. This can include training on specific techniques and strategies for supporting individuals with autism, as well as broader training on communication and interpersonal skills.

These are just some of the challenges faced in the provision of home and community-based services for individuals with autism, and potential solutions to these issues. By addressing these challenges, we can work towards a future where every individual with autism has access to the supports and services they need to thrive in their homes and communities.

Impact and Future Directions

As we assess the impact of home and community-based services (HCBS) and explore the future directions, it is important to look at two key aspects: Medicaid spending trends and the person-centered care approach.

Medicaid Spending Trends

Medicaid covers both institutional care and HCBS. In 2020, Medicaid paid for 54% of the $402 billion spent on long-term services and supports (LTSS), and for 57% of national spending on HCBS.

HCBS have become the primary delivery model for long-term care in the United States. In 2013, Medicaid spending on HCBS exceeded spending on institutional care. This shift was the result of sustained efforts by advocates, policymakers, and providers to increase access to HCBS.

The shift in Medicaid spending from institutional to home- and community-based settings, known as rebalancing, has been driven by concerns about the high cost of institutional care and to meet beneficiary preferences to live in the community. Efforts have included the Money Follows the Person (MFP) demonstration program, initiated by the Deficit Reduction Act of 2005 with funding extended until 2023 [2].

In fiscal year 2016, Medicaid programs spent approximately $95 billion on HCBS compared to about $67.1 billion on institutional services, indicating a 10 percent increase in HCBS spending over FY 2015.

The change in the proportion of total Medicaid Long-Term Services and Supports (LTSS) spending on Institutional LTSS and HCBS over the years from 2000 to 2016 reveals the evolving nature of HCBS policy.

Person-Centered Care Approach

The shift in Medicaid spending from institutional to home and community-based settings is not just about the economics. It is also about providing a person-centered care approach. This approach is all about meeting the needs and preferences of the individuals receiving the services.

In the context of autism, this means providing services that are tailored to the unique needs and abilities of each individual. This can include a range of services, from skilled health services to housing support, all designed to help individuals with autism live fulfilling lives in their communities.

The person-centered care approach recognizes that each person with autism is unique, with their own strengths, challenges, and goals. By focusing on the individual, this approach ensures that services are not only effective, but also respectful and responsive to individual patient preferences, needs, and values.

The future of HCBS for individuals with autism is promising. With continued investment and policy support, these services can continue to evolve and expand, providing more people with the support they need to live fulfilling lives in their communities.

References

[1]: https://medicaiddirectors.org/resource/why-did-they-do-it-that-way-home-and-community-based-services/

[2]: https://www.macpac.gov/subtopic/home-and-community-based-services/

[3]: https://www.medicare.gov/what-medicare-covers/whats-home-health-care

[4]: https://www.helpguide.org/articles/senior-housing/home-care-services-for-seniors.htm

[5]: https://www.homelesshub.ca/about-homelessness/service-provision/community-based-mental-health-care

[6]: http://www.ontario.ca/page/home-community-care

[7]: https://thearc.org/policy-advocacy/community-based-long-term-supports-and-services/

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