Navigating Severe Autism with Jill Escher

Caring for someone with autism presents a unique journey, filled with profound love and significant challenges. 

When autism is severe, the path can feel even more complex, especially when planning for a future that requires lifelong support. This week on the Autism Weekly podcast, we had the privilege of speaking with Jill Escher, a leading voice in the autism community. As the president of the National Council on Severe Autism (NCSA), an advocate, and a mother to two children with nonverbal autism, Jill shares invaluable insights from her personal and professional life. 

In this episode, we discuss the realities of profound and severe autism, a critical need for long-term care and housing, and the power of advocacy. Jill’s story is a reminder that families are not alone and there are concrete steps you can take to build a secure future for your loved one. 

Understanding the Landscape of Severe Autism 

The term "autism" covers a wide spectrum of experiences. Jill Escher’s work focuses on the more severe end of that spectrum, where individuals require continuous, substantial support. These are often individuals who are nonverbal or have limited communication and may exhibit challenging behaviors that pose risks to themselves or others. 

In our conversation, Jill highlights a crucial issue: the marginalization of families dealing with severe autism. Often, the public conversation about autism overlooks the needs of those who cannot self-advocate. This leaves many parents feeling isolated and unheard, struggling to find the right resources and support systems for their children, who will need care for their entire lives. Jill’s experience raising two children with different presentations of severe autism offers a candid look at the daily realities and the emotional toll it can take on a family. 

Planning for a Lifetime of Care 

One of the most daunting tasks for any parent of a child with severe autism is planning for the future. The question of "What will happen when I'm no longer here to care for my child?" is a heavy burden. The financial and logistical complexities of arranging long-term care can feel overwhelming. 

Jill emphasizes the importance of starting this planning process as early as possible. As parents age, the transition to adulthood for their children with severe autism becomes a pressing concern. The systems in place are not always easy to navigate, and finding suitable housing and support can be a significant hurdle. This podcast episode explores these challenges and provides a starting point for families beginning to think about a secure and supportive future. 

Actionable Tips for Families and Caregivers 

While the challenges are real, so are the solutions. Jill Escher offers practical, actionable advice for families to take control and build a stable foundation for their loved ones. These steps can help you navigate the system and create a comprehensive plan. 

Public benefits are a cornerstone of long-term care planning. Jill stresses the importance of understanding and applying for all available programs. These may include: 

• Medicaid: Provides essential health care coverage. 

• Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI): Offers financial assistance. 

• Department of Housing and Urban Development (HUD) programs: Can provide housing assistance. 

These programs are vital for ensuring your child has access to the medical care, financial resources, and housing they need to thrive throughout their life. 

A special needs trust is a legal tool designed to hold assets for a person with disabilities without jeopardizing their eligibility for public benefits like SSI and Medicaid. This is one of the most critical steps you can take. It allows family and friends to contribute funds for the individual's supplemental needs that are not covered by public benefits, such as recreation, technology, or personal items. 

Alongside the trust, Jill recommends creating a "letter of intent." This is not a legal document, but it is a priceless guide for future caregivers. It details your child's routines, preferences, medical history, and everything that makes them unique. 

The Achieving a Better Life Experience (ABLE) Act created tax-advantaged savings accounts for individuals with disabilities. These accounts allow people with disabilities and their families to save money for qualified disability-related expenses without impacting their eligibility for benefits. An ABLE account can be a powerful complement to a special needs trust, offering more flexibility for daily expenses. 

The Power of Advocacy and Community 

You do not have to walk this path alone. Jill Escher is a passionate advocate for joining forces with other families to create change. Advocacy groups provide a platform to make your voice heard by policymakers and service providers. 

The National Council on Severe Autism (NCSA) offers a grassroots network where families can connect, share resources, and advocate for better policies regarding housing, research, and care. By joining groups like the NCSA, you become part of a larger movement working to improve the quality of life for all individuals with severe autism. Jill also discusses the importance of advocating for appropriate treatments, including psychiatric care, to help manage severe behaviors and improve an individual's well-being. 

Listen to the Full Episode for More 

Jill Escher’s full conversation is packed with personal stories, expert advice, and a message of hope and empowerment. Her journey illuminates the path forward for so many families facing similar situations. By taking proactive steps and connecting with a strong community, you can build a secure and fulfilling life for your child. 

Listen to the full Autism Weekly podcast episode to hear more about Jill’s experiences and gain deeper insights into planning, advocacy, and the unwavering love that fuels this journey.