Parents of children and adults with intellectual and developmental disabilities face significant challenges in preparing for their loved ones’ long-term care, and a new national study highlights how widespread the issue has become. According to researchers at the University of Illinois, fewer than half of surveyed parents have taken concrete steps to plan for the future, despite the clear risks that arise when caregivers age, become ill, or pass away. This concern resonates with many families seeking guidance from our Chicago, IL special needs trust lawyer, as long-term planning is essential for maintaining stability and continuity of care.
The study surveyed more than 380 parents—primarily mothers—between the ages of 40 and 83. Their children with disabilities ranged from toddlers to older adults in their late sixties. Parents were asked about 11 specific planning measures, including identifying future caregivers, exploring residential programs, and establishing special needs trusts. Alarmingly, more than 12% reported taking none of these steps. Researchers emphasized that as people with disabilities are living longer, planning early is critical to preventing crisis situations, such as abrupt moves into institutional settings or sudden disruption of routines.
Many parents who had taken some steps admitted their efforts remained incomplete or “aspirational.” Barriers included emotional stress, family conflict, financial limitations, and a lack of appropriate residential or support services. More than 39% said their biggest challenge was simply finding accessible, reliable information about long-term care planning. The study’s authors stressed that while systemic service shortages are difficult to solve, improving access to information is an achievable and cost-effective step. Existing training programs, they noted, could be easily adapted for digital formats and multiple languages to reach more families nationwide.
How Long-Term Planning Lawyers Support Families
With so many families lacking definitive plans for the future, understanding available legal tools becomes even more important. This is where our Chicago special needs trust attorneys can play a meaningful role. Long-term care arrangements often involve a combination of legal, financial, and personal considerations, and working with professionals who handle these issues every day can bring clarity to an otherwise overwhelming process. Tools like special needs trusts help families protect assets, maintain eligibility for public benefits, and clearly outline the types of support a child or adult with disabilities should receive.
Legal guidance also connects directly with the study’s findings. Many parents indicated they struggled with information gaps or didn’t know where to begin. Professionals such as our special needs planning attorneys assist families in understanding how to create sustainable, long-term solutions. These plans may involve naming future caregivers, documenting care expectations in a letter of intent, or arranging estate planning for disabled individuals to ensure stability and seamless transitions.
Families often also need support with benefit systems, which is why our Medicaid planning lawyers can be invaluable. Making sure that a child or adult with disabilities remains eligible for crucial programs reduces uncertainty and helps avoid emergency placements—exactly the type of crisis the study warns about.
At Kravets Law Group, we understand how overwhelming it can feel to make these decisions, but no family should have to face them alone. If you need guidance, our team is ready to help you secure a stable future for your loved one. We offer free consultations for those looking for guidance, so don’t hesitate to reach out. We’re available to assist clients throughout Illinois, Pennsylvania, and New Jersey. We understand how difficult it can be to figure out the details of a trust on your own. Contact us today to speak with our Chicago special needs trust lawyers and take the first step toward peace of mind.