13 Important Things you must do for your Special Needs Family
Taking care of you child with special needs is an important job. I have compiled 13 Key things a caregiver must do for a child with special needs. 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, ongoing evaluations, 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 may have more financial means, many may not. 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 your “air traffic controller” that coordinates your landings, gates, baggage and safety. We are here to “watch your flanks”(and back), and works with your whole picture as it changes with services, resources, professionals, legal, financial and sound strategies specifically for your family’s needs. Not every family will need a special needs trust or a conservatorship… This is a community we live in and amongst each other.
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, agencies and organizations responsible provide these resources and services, and help clear the path for those less fortunate families that deserve those services but could never afford that fight.
5. Make strategic financial and legal plans
This is important to do and have in place. 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 # 3 above… Be prepared for what’s coming and expect changes to happen.
6. Create an Instruction / Care Guide / User manual – “Letter of Intent”
A letter of intent clearly identifies your child’s / member’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 of this can be easily updated and stored with various other important documents, 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. All these documents should be included for safe keeping and easy access (physical and electronic versions with an off-site copy or two). Probate is the very expensive answer to not being prepared. 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.
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 wherever possible first.
Find, use and support the businesses, services, professionals and organizations that are special needs parents, sibling owned or highly supportive 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. 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 (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. 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 progress forward, invaluable to your family and/or invaluable to your needs. Really let them know as one cannot hear these words of 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.
About the Author
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. You can follow him at www.facebook.com/specialneedsadvisor