An Advocate for the Special Needs Population

October 15, 2008

The past few weeks I’ve watched politicians point fingers and craft hasty (and unsuccessful) solutions to a global economic fiasco.  I’ve now lost more than money.  I’ve lost confidence in the integrity of our leaders, as well as their willingness to address difficult problems before they devolve into a crisis.

For some time now, I’ve been waiting for our leaders to tackle festering issues affecting millions with special needs.  Our present morass only heightens my concerns.  With their attention on the disintegrating economy, which affects us all, are they likely to focus on problems involving an admittedly smaller, but vulnerable population?

I’ve harbored a glimmer of hope ever since Sarah Palin first promised American voters that, as vice president, she would focus on reform and special needs advocacy.  As a governor, she has insight into the issues.  As a mom, she has the passion to help her son and others like him.  As a vice presidential candidate, she has an agenda to reform broken systems.  It’s a perfect fit.

With the election drawing nearer, it’s time to pull out the stops.  Here’s a shout-out to my fellow hockey and special needs mom.  Sarah (Can I call you Sarah?), when you said of your infant son with Down syndrome, “Sometimes even the greatest joys bring challenge,” you hit me where I live.  While the media focus on special needs kids, the reality is this population is both increasing and aging.  Next year, my son with autism will be old enough to vote.  While his needs are changing, they are not necessarily diminishing.  Despite their different ages and diagnoses, our boys have extraordinary needs for special education, health care, school- to- work transition, and housing.

Many special needs families rely upon the government to deal with an array of challenges.  Families are frightened because  federal and state deficits are growing and spending cuts are inevitable.  As a parent and a politician who fired your personal chef, you are poised to assess whether families are getting what they truly need, as opposed to what they want.  In our new reality this will be an unwelcome litmus test.

Politics aside, there are many who need your leadership. We need someone to inventory the health care, social services, education, and housing and employment programs operating in silos to serve all ages.  Let’s start at the beginning.  How many people are diagnosed with special needs?  How much money is being spent on services, education, and research?  What departments disburse funds and with what outcomes?  By the way, why does the Department of Defense fund autism research?

As a governor, you surely understand that special education is costly and controversial and replete with difficult considerations of equity.  As a parent of children with and without special needs, you bring a balanced perspective to difficult budgetary dilemmas.  With different funding mechanisms, it is important to assess whether resources are being properly allocated to general and Special Education programs – before the latter breaks the back of the former.  There also needs to be accountability within the Special Ed system so that funds are allocated fairly among students and parents who threaten to bring lawsuits do not get more services than those who accept that you get what you get.  And the regulations!  Why do educators spend such a disproportionate amount of time on paperwork instead of teaching?

Sorting through these challenges will make your Katie Couric interview seem like a girls’ night out.  Yet, as a newcomer with no affinity for particular programs, you can evaluate how they function and encourage creative solutions to optimize resources, engage the private sector, provide parity to families, and maximize taxpayers’ investment.  You can also evaluate whether critical research that generates desperately needed, informed solutions, is escaping the NIH budget scalpel.

Sarah Barracuda, if you, your maverick partner (and your fabulous red pumps) land in Washington, I will be counting on you to keep your promise to shake things up.  On the other hand, if the Straight Talk Express crashes on the Bridge to Nowhere, I hope your opponents, who don’t wear our shoes, will make these concerns a priority on behalf of millions of Americans like our sons who can’t advocate for themselves.