Transition Tips from the Trenches: A Parent’s Perspective

Authors: Barbara Knighton, Parent, Family Leader, Council Member of the Texas Council for Developmental Disabilities (TCDD), and Co-founder of Family Lynx, a family organization of the Texas School for the Blind and Visually Impaired (TSBVI)

• Start transition early. We began in 7th grade when my son was 13. We were fortunate to have a supportive and knowledgeable classroom teacher and some outstanding support staff.
• Attend trainings and conferences about special education, guardianship, transition (both educational and medical, if needed), social security, and life after 18. It is very overwhelming at first, but you can always circle back and revisit the information most relevant to you. 
• Ask questions. Transition is a totally different and individualized experience for every special needs student. This path is very involved and has many players. Include as many friends and family members as possible as you travel this path with your child. 
• Learn from the professionals and educate them as well. Each student’s experience going through transition is unique. Take in all the information, then allow yourself time to digest it. If something doesn’t feel right, it is okay to question it. You are your student’s best advocate.
• Treat this experience like any other business project you would tackle. You are the project manager and do your best to leave emotions at the door during ARD meetings. You may not have years of experience in the special education field, but you have value and bring a very important and specific set of experiences to the table. You know your student better than anyone. Have staff explain any terminology you do not understand.
• Allow your student to lead, make choices and advocate for themselves if they are able to do so. This will help to build their confidence and instill in them an important and valuable sense of pride.
• Give yourself grace and take time for yourself. This process can be very stressful. Keeping good records and staying organized will help to lighten your load. Document everything!
• Find your allies and collaborate with them. You will work with many different people with different personalities. Remain professional and calm. This is very important, and it can be very difficult to keep your cool, but it will pay off in the long run.
• Think about when your student finishes their public school education. What will be your role after that? You are not only planning your student’s future, but yours as well. There are many decisions to be made. Will you have time for what is needed or expected? Are you going to be the primary caregiver or is someone else? Think about how much time you will have to devote to your student’s life after the end of their education. 
• One of those decisions is where your student will live. Do you want them to live with you or somewhere else? Where do they want to live, and do they have the skills to do so?
• Tour residential facilities, group homes and day programs. We toured Marbridge, Down Home Ranch, Bridgewood Farms, Project Beacon, Special Angels of the Woodlands, and Treasures of JOY. Start getting involved with organizations and see what is going on by liking their Facebook pages and signing up for their newsletters.
• Make sure you get your student a driver’s license or state ID and passport before they turn 18.
• Set up a special needs trust and/or ABLE account for your student. The ABLE account can be used to spend trust money. For more information on Texas ABLE accounts, please read another article in this issue of TX SenseAbilties in the News and Views Section titled, “Unlock Financial Freedom With a Texas ABLE Account”.
• Plan for day programs or residential options with the funding you currently have in place. Don’t plan on using funds that might be available in the future. This will give you some clarity and make it easier to find options that are immediately available to your student.
• Find your moment of awakening. There will come a time during this journey when you will realize what your vision is and how to proceed. Ours happened when TSBVI Outreach came for a student consultation in 2018 when my son was in 8th grade. At that meeting, a slew of emotions took hold, but that’s when I knew what needed to be done to get my son where he needed to be by the time he finished his public school education. My most recent awakening came when planning for his life after TSBVI during his second year in the EXIT program. These important moments can help you realign your goals and narrow your focus.
• Get to really know your student. Give them responsibilities. Work with them when they are home. Find out what they like and dislike, what their hopes, fears and dreams are. They may not know what they want now, but giving them an array of experiences over time will help them find a path for the future.
• Start researching guardianship attorneys early. They are very costly and many people need several years to save up the funds. The cost of guardianship ranges between $2,000 to $4,000. Some attorneys only accept payment in the form of a check and don’t accept credit cards.
• There are two forms of guardianship: guardianship of the person and guardianship of the estate. If your student has no accounts in their name, then you only have to do guardianship of the person. This can save some time and money.
• Discuss guardianship ahead of time with your student’s primary care physician.  We chose to have the paperwork filled out by our developmental pediatrician because of her extensive knowledge about this matter and prior dealings with guardianship cases. 
• If your student will be continuing with the same medical providers past the age of 18, make your providers aware of your decisions for guardianship ahead of time.  If you are not doing guardianship, then a power of attorney (medical or durable) will need to be completed. Supported Decision-Making documents are not always accepted by some medical professionals.
• Once you have the guardianship papers from the court, send copies to all three credit reporting agencies to freeze the person’s credit. This may prevent potential fraud and identity theft from occurring. 
• Apply for social security the month of your student’s 18th birthday. Many banks will not let you open a representative payee account until you receive the award letter from SSI. This can take some time, so start early.

This is an overview of things I have learned from going through the transition to adulthood and guardianship processes. We chose to do full guardianship of the person, but you will have to decide what works best for your student and your family. There are many forms of guardianship/powers of attorney and many different paths for transition. 

I wish all of you the best of luck and hope that this document has shed some light on what can be a very complicated process. Remember everyone’s experience is different and individualized. You are your own best and worst critic. The longer you are on this journey, the clearer your vision for the future will become. 

My advice: Work the plan. If the plan isn’t working, change it, not the goal. Don’t forget to enjoy this time exploring different life paths and new possibilities with your students as they move into adulthood.