Letter to The Editor

Many of the questions we receive via email at the Council touch on issues that affect many others in our community. We will occasionally share these questions anonymously as “letters to the editor,” removing all identifying details. This allows us to address common concerns and provide helpful information to a wider audience, while respecting the privacy of those who reach out to us.

Dear Council on Developmental Disabilities,

As the parent of a 24-year-old son on the autism spectrum, I'm feeling overwhelmed trying to plan for his future. He currently works at a job through Vocational Rehab, but I worry about what will happen when my wife and I are no longer able to care for him. What resources are available to help us navigate adult services and plan for his long-term care? Any guidance would be greatly appreciated.

- Concerned Parent

Dear Concerned Parent,

Many families share your concerns about long-term planning for their loved ones with disabilities. We’re glad to offer some guidance on resources that may help!

First, we highly recommend applying for Employment and Community First (ECF) CHOICES. This Medicaid program provides lifelong support for activities of daily living, employment, and community participation. Services can include transportation reimbursement, community activity support, and job coaching. If your son ever needs to live outside your home, ECF CHOICES can also assist with residential services and staffing support.

While there is limited funding and a potential wait list, applying now will help ensure support is available when needed. You can apply online through the Self-Referral Form. If you need assistance, free help is available by calling your health plan (if you have TennCare) or your regional Disability and Aging Office.

We also suggest exploring the Center for Decision Making Support. This resource offers tools to help you and your son explore different levels of decision-making support. The LifeCourse Exploring Decision-Making Supports Tool is an excellent place to start. It can help you both think through the types of decisions where your son may need assistance, from healthcare to finances to daily living.

The Center’s website also provides information on various legal documents and formal agreements that can support decision-making, such as power of attorney or healthcare directives. These resources can help you plan for your son’s future while respecting his right to make decisions to the fullest extent of his capacity.

We’re here to help families like yours navigate this journey. With some proactive planning, you can feel more at ease about your son’s future care and support.

Wishing you all the best,

- The Council Team