Today’s guest blogger Douglas Baker is a national speaker, consultant, advocate, and specialist for the autism and special needs communities. As a parent of an adult son with autism, he has over 20 years of experience guiding and navigating families through interconnected services, resources, agencies, professionals, and planning demands. He stopped by to share his baker’s dozen of key issues parents need to address, though not all at once.

13 Key Special Needs Issues for Families to Address

1. Get a proper diagnosis and assessments early. These are the building blocks for successful early intervention, IEPs, ongoing evaluations, services, support, benefits, management, and living options.
2. Accept your child. Accept yourself. Accept this community. There are thousands of us. Just like you. Some may have more financial means, but we all have many of the same needs, challenges, and concerns. Sometimes scared, upset, and trying to understand, learn more, live a life, rebuild our dreams, and thrive.
3. Get a special needs advisor in your inner circle. We get it. We are air traffic controllers who coordinates your landings, gates, baggage, and safety. We work with your whole picture as it changes with services, resources, professionals, legal, financial, and sound strategies specifically for your family’s needs.
4. Stand up for what you know are your child’s needs and be willing to fight them. Hiring experienced professionals may and will most likely be necessary. Some families have the financial means pay for services outright…DON’T ! Big Mistake… Make the schools, agencies, and organizations responsible provide these resources and services to clear the path for those less fortunate families that deserve those services but could never afford that fight.
5. Make strategic financial, special needs, and legal plans. Life insurance is not the end all answer to planning. Attorneys sell trusts (estate and special needs) and planning, but do they know your whole picture? Do they understand, specialize and do special needs work all the time? There are poachers in many professions preying on our vulnerability. Go back and read number 3 above. Be prepared for what’s coming and expect changes to happen.
6. Create an Instruction/Care Guide/User Manual/Letter of Intent. Clearly identifies your child’s skills, traits, likes, routines, preferences, and more. This provides a road map to new service and care providers, as well as guardian transference. Today’s electronic versions can be easily updated and stored with other important documents, pictures, videos, and recordings.
7. Get the basics covered—Will, Estate Plan, and Special Needs Provisions. Centralize these with your own medical directives. All these documents should be included for safe keeping and easy access, physical and electronic versions along with offsite copies). Probate is an expensive answer to not being prepared. The last thing you want is courts and lawyers spending tens of thousands of dollars making decisions far and away from what you wanted or intended.
8. Be willing to ask for help. Don’t go at this alone. That is a huge part of our service. There are associations, parent groups, organizations, and foundations. We help you find the advocates, services, and professionals that do this effectively and efficiently. Hire the best you can afford. Although the best aren’t always the most expensive. There are some free legal service organizations available for those families that qualify.
9. Support your special needs community members first wherever possible. Find, use, and support the businesses, services, professionals, and organizations run by special needs families or highly supportive others. This is how we serve, support, grow, and give back to build a stronger and self-sustaining special needs community of which we are a part. That also includes professionals who are making their living from these special needs families and organizations.
10. Pay attention to the entire family’s needs. Don’t get lost in the special needs vortex. Minimize the lopsidedness as much as possible, and make time and events for the other non-special needs family members.
11. Remember ME time. A healthy happy parent is much more valuable to their family members. Respite and separate quiet or fulfilling time and events are okay and necessary.
12. Show appreciation to the people and professionals instrumental in helping your child progress. They are invaluable to your family. Let them know often as they cannot hear these words of appreciation enough.
13. Make active charitable contributions. Making contributions during your life allows you to see and participate in community benefits. Legacy/gifting plans are wonderful extensions to be remembered by as well and vital to many serving non-profits as well.

Your Key Special Needs Issues?

What are your family’s special needs issues? If you ‘d like to add them to the list, leave them in the comment box.

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