13 Key Issues Special Needs Parents Need To Focus on for Their Family
This is a post by Douglas Baker, a national speaker, consultant, advocate and California 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 the lifespan of inter-connected services, resources, agencies, professionals and planning demands.
I call these my Baker’s Dozen – This is in no way a complete list, and each and every family’s situation will have nuances. Remember, it all can’t or doesn’t need to be done at once;
1. Get a proper diagnosis and assessments early. These are the building blocks for successful EI, IEP’s, ITP’s, services, support, benefits, management and living options.
2. Accept your child. Accept yourself. Accept this community. There are hundreds, even thousands of us close by. Just like you. Some are financially well off, many are not. 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 here to “watch your flanks”, and works with your whole financial picture as it changes with services, resources, legislation, and sound management strategies. This is a community we all live in together.
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 to just skip the fight and pay for services outright… DON’T ! Big Mistake… Make the schools or agencies responsible provide these resources, and help clear the path for those less fortunate.
5. Make financial, special needs and estate plans. This is important to do and have in place. Be prepared for what’s coming and expect changes to happen. The last thing you want is some courts and lawyers spending tens of thousands (or significantly more) of dollars making decisions (probate) far and away from what you may have wanted or intended.
6. Create an “Instruction / Care Guide / User manual” – Letter of Intent. Clearly identifies your child’s / member’s skills, traits, likes, routines, preferences and more… This provides a roadmap to new service and care providers, as well as guardian transference. This is easily updated and can be stored with pictures, video’s and recordings.
7. Get the “Basics” covered – Will, Estate Plan and Special Needs provisions and centralize these with your own medical directives and all those documents should be included for safe keeping and easy access (with an off-site copy or two). Probate is the very expensive answer to not being prepared.
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.
9. Support your Special Needs community members wherever possible First. Find, use and support the businesses, services, professionals and organizations that are special needs parents, sibling owned or highly support of us first. Given the choice, this is how we serve, support, grow and give back to build a stronger and self-sustaining special needs community for which we are a part of. Remove your financial and services support from “badly behaving” corporations and institutions, and their products
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 family member (significant other and children).
11. Remember “ME time”. A healthy happy parent is much more valuable to their significant other, their family and their special needs child(ren). Respite and separate quiet or fulfilling time and events are okay here, and actually necessary.
12. Show appreciation to the people and professionals that are instrumental in helping your special needs child(ren) progress forward, invaluable to your family and/or invaluable to your needs. Really let them know as one cannot hear these appreciations enough.
13. Are you in position to make active Charitable Contributions ? Making contributions during your life allows you to see and participate (as you care too) in community’s benefits of your good will. Legacy / Gifting plans are wonderful extensions to be remembered by as well and vital to many serving non-profits as well. There are so many other issues that come into play here. These provide and excellent base. This is an organized and dynamic process at work here.
Douglas Baker is a national speaker, consultant, advocate and California 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 the lifespan of inter-connected services, resources, agencies, professionals and planning demands. He is an educator, writer, and community catalyst, and one of the few nationally that understands and integrates the legal and financial strategies around these lifestyle needs and challenges. Doug spent two decades as a technology sales management executive implementing process and infrastructure improvement systems into some of America’s largest organizations.