Our state legislators should be ashamed of Illinois' rankings when it comes to people with special needs and those who love them.
The numbers are simply appalling. Illinois ranks 47th in the nation in spending on community services for special needs and dead last in the development of community living options.
Unlike more progressive states that have moved funding and focus to more community-based solutions, Illinois relies on state institutions, even for those who may be better served by a community living environment. Yet thousands who need residential living arrangements languish on institutional waiting lists because that's their only option.
Tony Paulauski, executive director of The Arc of Illinois, a disabilities advocacy organization, believes the issue comes down to leadership. (Click here to see the Blueprint for System Redesign in Illinois.) "They've made disabilities and human services a pawn in a game to increase taxes but when the funding comes we are always at the end of the line."
Despite the attention on the current budget crisis, Paulauski has seen at least a decade's worth of inattention to special needs funding. On the upside, he's also seen an upswing of grass-roots coalitions of parents and advocates demanding solutions.
Illinois' officials know what they need to do. A seven-year plan, called the Illinois Blueprint for System Redesign, created for the Illinois Council on Developmental Disabilities, details the path from an underfunded system to one that actually puts money where it's needed and builds communities tailored to the specific needs of all of our children.
As you've discovered already from the day your child was born, you must be an advocate. You must find a way to get involved in public policy. "Quite frankly your life and the life of your sons and daughters depend upon it," Paulauski says. "The quality of those services are directly related to how our legislators vote in terms of funding special education, human services, community living, public benefits, health care, just go right down the line."
In an ideal world, then, you could focus on loving your children and not those questions that keep you up at night about their future: Who will care for them when you die, where will they live and work when they grow up and how can you get all the services they need to have the best life possible.
Unfortunately in Illinois, we're a long way from an ideal world.