Navigating the Path to a Secure Future for Children with Disabilities A Comprehensive

Guide for Parents and Professionals in Disability Planning

I’ve been using ChatGPT for a while now, and I’ve found it to be incredibly useful - as a starting point. I wanted to get an idea of what it would tell a parent to do if a parent asked. Here are the parameters I gave it. Caveat, I’ve also “trained” it on who I am. I’ve set out to be the country’s foremost “Special Needs Navigator”, a disability planner whose focus is helping families and professionals across the country navigate the maze of benefits, resources, and services. Answers will vary based on what you’ve told GPT about yourself.

“I'm a parent of a sixteen-year-old child with significant intellectual and developmental disabilities. They require assistance with all of their ADLs. What should I be doing to prepare for their future, specifically after they leave high school?”

Below is the response it gave me. I’ve made my comments under each bullet point, preceded by ^. Bold emphasis added by me.

1. Individualized Transition Plan (ITP): Work closely with your child's school to develop an Individualized Transition Plan. This plan should address your child's specific needs and goals for life after high school, including vocational training, employment opportunities, and independent living skills.

^ According to Sue Whitney, a Research Editor for Wrightslaw, “In most states, schools are not required to do transition assessments to decide what services a child needs until the IEP that will be in effect when the child is 16. I encourage you not to wait for your child’s IEP team to start this process. At the very least you should be looking for, and attending, transition fairs as soon as your child enters High School.

^ There is a LOT to learn about life after High School, not the least of which is understanding that services will no longer be an “entitlement”. Every state has at least (1) Medicaid Waiver for individuals with Intellectual and/or Developmental Disabilities (IDD), however the criteria to qualify will vary. As will the availability of the services. If you’re interested, I’ve built Roadmaps for all 50 states and DC to help guide you in the transition process. You can purchase yours here.

2. Guardianship and Decision-Making: Explore the legal options for guardianship or alternatives like supported decision-making. Consult with Special Needs and elder law attorneys who can help you understand the best way to protect your child's interests as they become an adult.

^ Opting to become my son’s Guardian remains one of the hardest decisions of my life. It’s not the same thing as being a parent. Your child must be deemed “incompetent” by a State Probate Judge. Although you don’t have to hire an attorney to represent you, your child will be assigned an attorney to represent their (the child’s) best interests. I believe everyone considering Guardianship should, at the very least, consult with an attorney to ensure they have a very clear understanding of the pros & cons, and their responsibilities as a Legal Guardian (Conservator).

^ The National Guardianship Association explains Guardianship (Conservatorship) is “a legal process, utilized when a person can no longer make or communicate safe or sound decisions about his/her person and/or property or has become susceptible to fraud or undue influence.” I’ve found their website to be extremely helpful over the years.

3. Financial Planning: Collaborate with financial advisors who specialize in disability planning. They can assist you in creating a comprehensive financial plan that includes setting up special needs trusts, exploring government benefits like Supplemental Security Income (SSI) and Medicaid, and planning for long-term financial security.

^ I don’t agree with this, mostly because I don’t think there are enough financial advisors out there who specialize in disability planning. For the most part, I think you will be okay working with someone who takes the time to understand what your concerns and needs are. You may need to be direct and explain to them your circumstances, especially if you believe you will have to provide for your child for the rest of their lives. You can work with me, or ask your Advisor to connect with me.

^ Not everyone will “need” to work with a financial advisor. Yes, I believe most of us will want to have some amount of life insurance to fund a Special Needs Trust. But that’s a bias I have and, if you do feel you need it, there are options like PolicyGenius or insurance brokers. I can give you an introduction if you’d like.

4. Government Benefits: As you mentioned, simplifying government benefit language is your goal. You can educate yourself and others about SSI, Medicaid, and other relevant benefits to ensure your child's eligibility and maximize the support they receive.

^ ChatGPT misunderstood my goal, which is to make disability planning more accessible. One way to do this is to simplify the language used by the state and federal governments. This is the area I don’t feel enough people are talking about. Sure, I see plenty of articles about SSI and Medicaid, but where are the discussions around Medicaid Waivers and what they can do for you or your child?

^ Every state has at least one Medicaid Waiver for those with Intellectual and/or Developmental Disabilities (IDD). These Waivers will pay for Residential, Personal, Community, and Vocational support. Medicaid doesn’t pay for your rent or mortgage, rather it covers the salaries of the staff working with you or your child. Enrollment is NOT automatic, you have to apply and be approved. Even when approved, depending on where you live there may be a waiting list. So it’s better to apply as soon as you can.

5. Transition Services: Connect with local disability service providers and agencies that offer transition services. These services can help your child develop the necessary skills for independent living, find suitable housing, and explore potential employment opportunities.

^ See above. In most cases, these providers will be paid for by Medicaid. You need to be on a Waiver to get help. Vocational Rehabilitation is a separate entity, anyone with a disability of any type can apply for their services as early as age 14 (Pre-Employment Transition Services).

^ Look for “Transition Fairs”, opportunities to learn about what’s available for your child after High School. Talk to your child’s IEP team. Transition should be a regular topic around age 14 (depending on where you live). Don’t let this be a once-a-year discussion. Ask them who the community providers are. They probably won’t feel comfortable giving you a specific recommendation, but they should be able to give you a list for you to reach out to.

6. Healthcare Planning: Ensure that your child's medical and healthcare needs are well-documented. Discuss with healthcare professionals how to manage their medical care as they transition into adulthood, including any specialists they may need to see.

^ If your child is seeing a specialist this is a critical step to take. I’ve heard from many families that there is a lack of experts for adults with disabilities. So people continue to go to their pediatric specialists.

^ If you’re considering a move to another city/state, take the time to see what’s available and if they’ll take your insurance. Medicaid won’t necessarily follow you across state lines, you’ll have to apply again in the new state. This could mean the loss of Waiver services too.

7. Social and Recreational Activities: Consider community-based programs and activities that can provide social interaction and recreational opportunities for your child. This can help improve their quality of life and foster independence.

^ I feel there are more opportunities now, especially in larger cities. Again, where you live matters. Try not to get too caught up in a diagnosis or all the medical stuff that needs to be done. Help your children be kids. Or, if they’re already adults, try to help them discover or explore their interests.

^ This is an area I feel I failed my son. I was so focused on trying to help him become more independent that I didn’t push him to be more social or help him discover hobbies. Now we’re paying for it. He refuses to interact with anyone, including his staff. And it’s impossible to get him out of the house. I don’t know if anything would have been different, and candidly I don’t spend too much time living in regret. What’s done is done. I’m hoping this is a “phase” he’ll grow out of.

8. Network and Support: Join support groups and connect with other parents or families facing similar challenges. They can offer valuable insights, share experiences, and provide emotional support during this journey.

^ This is another “do as I say, not as I do”. I tried support groups when my son was younger, shortly after my wife died. I felt like I was at work, as I tended to share resources. Annette Hines, Founder of Special Needs Companies and Host of the Parenting Impossible podcast, has started a new community, Circle of Care.

9. Advance Directives: Discuss and document your child's healthcare wishes and preferences. An advance directive can help guide medical decisions in the future.

^ I feel this should include estate and end-of-life planning. Make sure you’ve documented what you want as well. If you are your child’s Guardian/Conservator try to determine what they would want. This is where a tool like Five Wishes can help. Talk to your Special Needs Attorney about how to document what your child, or you on their behalf, would like to happen.

10. Continued Education: Stay informed about changes in disability laws and government benefit programs. As a Special Needs Consultant, your expertise will be invaluable in navigating these systems effectively.

^ Most of you reading this are probably not consulting with other families whose children have disabilities. I would still encourage you to keep up with what’s happening in your state and at the Federal level, to the best of your ability.

^ In my experience, Case Managers and other professionals tend to wait for you to tell them what you need. This makes sense, think about how many people they’re working with. But it can make things harder for us as parents because we don’t know what we don’t know.

^ This is why I put out so much content. Policies are slow to change, but new organizations are starting almost every day. Technology is leveling the playing field for those with disabilities. The trick is finding what’s out there and seeing if it works for you.

Remember that each child's needs are unique, so it's essential to tailor your planning to your child's specific situation. Consulting with professionals in the fields of special needs law, finance, and disability services can provide you with the guidance and resources you need to prepare for your child's future effectively.