How to Thrive as a Special Needs Family and Community

Douglas Baker is a wealth manager and parent of two adult children. His son Scott is 22 and is affected by Autism.

We live in a world that is fast-paced, high-tech, image driven and unforgiving, fueled by sensationalized media and reality television shows portraying what is now considered by many to be “normal”. Add to all of this a special needs newborn, child or adult in a family, and reality becomes a sub-world driven by a lifetime of challenges that require incredible commitment, compassion and persistence, as well as a lifespan of specialized planning and services. To thrive instead of simply survive as a family affected by special needs, it is important to have a socially integrated lifestyle with acceptance and great support groups, both personally and professionally.

Who are the special needs families? Families of genetic and birth conditions, or affected by Autism spectrum disorders, mental health and related illnesses, intellectually challenged and learning delayed, and physical or brain impairment though injury or trauma – a global microcosm of cultures that transcend race, religion, gender and the socioeconomic status.
A look at the numbers (compiled 2010-2011)

• 54 million American adults (nearly 20% of population) are affected by a mental or physical disability

Over 6% of children ages 5-15 suffer from a disability

• NAMI reported that there are 1 in 4 households affected by a mental illness
• US household wealth is approximately $60 Trillion.
• The math: 1 in 9-10 households are affected by a significant special need.

What does this mean? Conservatively, 1 in 10 equates to a $6 TRILLION special needs community.

How do we thrive instead of just survive? The special needs world is massive and continually growing. Change is needed to reverse the service and funding cuts and influence legislation to better serve our communities. Facilitating change is really not that difficult. Much of it is a matter of changing to better habits and behavior. A good example of this is eating healthier because of a health risk diagnosis such as diabetes, high cholesterol or high blood pressure.

+ Start using and supporting special needs owned and managed services, business, products, professionals and organizations highly supportive of our communities. We chose every day where we spend our money. Why wouldn’t we be supporting our own community members who are the ones that give back to the community?

+ Start using credit unions or local and community banks instead of these massive banking institutions that are behaving badly with no regard for our working Americans, yet alone our special needs families. You can better support the communities where you live. These local banks usually have better service, lower fees and almost all give you a certain monthly dollar credit toward ATM fees you may incur elsewhere.

Changing legislative poor behavior toward our special needs communities… Yes, we will still have fragmented communities and differing agendas, but unions and big special interests all have their various agendas too, and they always bring their money behind their voices. This legislative game has been defined for decades, and for some reason, our special needs communities have never learned how to play it. Over the last decades, our services have eroded while our numbers have exploded. The math doesn’t work. And in July of this year, it was announced the Federal government expects another $900 Million in reductions if congress doesn’t act before January 2013.

“Either We Organize and Thrive, or Die a Painful Existence Divided…” Today there are small numbers of special needs advisors throughout America working with thousands of families doing just this – building the foundation for a national network and increasing our economic clout. As affected community members, we are the one’s serving, guiding, growing and giving back into our communities. A united effort from our families, the serving professionals, our supporting institutions and foundations, and everyone involved makes this happen. This is our “Occupy Special Needs” movement. Our mission is to make our money visible to increase our services relationally to the communities. Our directives are to support, empower and enhance our own communities. Our measurable results will change the future of special needs legislation, research and services while preserving our American dream.

We are the parents, the advocates and the professionals of special needs. We must also be the “catalyst” of change for our special needs communities and the future of our children. We are tens of millions strong, yet we start with one child, one family and one village at a time.

“It falls upon us and only us – The Village that sustains itself, the Village it takes to raise a child, the Village it takes to support our families” – D. Baker