ABHM offers more than housing and health care to seniors. Through our Crest Services division, we provide support to those with developmental disabilities or those who have suffered brain injuries. Crest Services operates in Iowa and Southern Minnesota. Our new blog post focuses on the Crest Services division, and is written by a family member of a recipient of our services.

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As parents of an adult child with special needs, we’re always looking ahead. How can we ensure Alex is secure and cared for when we’re no longer here? Alex, our 38-year-old son with developmental disabilities, lives at home and receives hourly Home and Community-Based Services. Late in my career as a healthcare executive, I shifted my focus to working with individuals with physical and intellectual challenges to better understand the complexities Alex will face ‘in the system’ as he grows older.

Unique Challenges for Parents of Children with Special Needs

We can foresee a time when Alex’s needs may no longer be safely met at home, even with services. There will also come a day when neither of us will be present in his life. For parents of children with special needs, these thoughts weigh heavily. While all parents worry about their children’s futures, the complexity of securing appropriate services and planning for a safe, fulfilling life adds an extra layer of concern.

Navigating a Complex System

Like many families with special needs children, we became a single-income household. As a result, all three of us may eventually depend on government services. Over the years, we’ve learned to navigate Medicaid, Medicare, Social Security Disability Insurance (SSDI), trusts, and more. It’s been a journey of study, trial and error, and seeking trusted information.
The path to securing Alex’s future isn’t always clear, but we’re determined to find the right solutions. This means diving into the complexities of the system, advocating for the services Alex needs, and continuously adjusting our plans to reflect his evolving needs.

Alex’s Journey Through the “Circle of Life”

Services for individuals with developmental disabilities are often provided based on age, income, and specific needs—factors that shift over time. Borrowing from The Lion King, this journey feels like a “Circle of Life,” with Alex’s cycle having unfolded in these key stages:

• Early Years: Receiving services from about two years old until high school graduation at age 19.
• Vocational Training: Entering an eight-week program post-high school to develop independent living skills. Unfortunately, he was unsuccessful in this program.
• Intellectual Stimulation: Pursuing college courses, adult education, and involvement in programs such as the Kiwanis Aktion Club, where he has served as treasurer and secretary.
• Current Life: Living at home while becoming eligible for Home and Community-Based Services, Medicare, Medicaid, and SSDI.

Each stage brought new opportunities and challenges, requiring us to adapt and keep moving forward.

Planning for the Future: Hard Choices and Heartfelt Decisions

As a middle-aged man, Alex has many years ahead of him, so we are exploring long-term solutions that provide person-centered services, including:

• Group Homes, Host Homes, and Family Host Homes: Services funded by government Medicaid programs administered through the state, available once assets are “spent down.”
• Establishing a Medical and Financial Power of Attorney: Identifying a younger family member willing to take on this role when we are no longer able to assist Alex. This involves creating a legal agreement.
• Engaging a Financial Advisor: Working with a specialist to evaluate our assets and establish a small trust to ensure Alex retains access to essentials like a computer and internet access.

These decisions are never easy, but they’re vital to ensuring Alex’s security and well-being.

Finding Hope Through Planning

To parents walking this path, I send my best wishes. Though it’s challenging, the process is filled with moments of pride and joy. Each plan we make brings us closer to ensuring Alex’s future is bright and secure.

If you’re navigating similar challenges, we’d love to hear your story. Together, we can find strength in knowing we’re not alone. Planning gives us hope—for Alex, our family, and others. It’s a labor of love—one we face with determination, courage, and faith in a brighter future.