* But it looks like a good one…

Ed Izenstark inherited Huntington’s disease from his biological father, but he only found out after the fatal nerve disorder began to show itself and after months of frustrating and costly efforts to learn more about his origins.

The 30-year-old father of three from the Chicago suburb of Batavia was hospitalized last May with severe stomach pains, nausea and involuntary twitching that his doctors couldn’t explain. Suspecting it could be genetic, Izenstark sought more information about his background but had a hard time getting it from state adoption agencies. In February, he finally learned that his birth father had the disease. On Friday, his fears were confirmed that he did, too.

“(The information) should be available to anyone, if it’s yours. But it’s not yours. It’s the state’s and the state decides,” Izenstark said.

The Illinois House is considering a measure that would allow agencies to let people know the reasons they were put up for adoption and other information that wouldn’t identify their birth parents, including details of their medical histories. Its sponsor, Rep. Sara Feigenholtz, a Democrat from Chicago who was adopted herself, said the changes would be a real benefit to adult adoptees.

* Meanwhile, from a press release…

Calling attention to the growing staffing crisis affecting people with developmental disabilities and urging immediate action to address the problem by raising wages for Direct Support Professionals (DSPs), a wide-ranging coalition of disability advocacy groups will join key legislators at a press conference [today] in the Illinois State Capitol.

In Illinois, over 27,000 people with developmental disabilities live in apartments, group homes and other residential programs. DSPs in community agencies provide the foundation for community living. They ensure the health, safety and well-being of people with developmental disabilities by providing daily personal care, teaching life skills, and supporting people to be actively engaged and working in their community. But the state has not adjusted reimbursement rates for community agencies to raise DSP wages for eight years. […]

The coalition includes The Arc of Illinois, the Illinois Association of Rehabilitation Facilities, AFSCME Council 31, Don Moss & Associates, The Center for Developmental Disabilities Advocacy & Community Support, The Institute on Public Policy for People with Developmental Disabilities and McManus Consulting.

They also have a video. Click here to watch it.

* Switching gears a bit…

State Sen. Sam McCann is seeking to protect from government intrusion the longtime practice of “seed sharing.”

McCann, a Plainview Republican, is sponsoring a bill aimed at clarifying ambiguity in current state law that could require the exchanging and sharing of seed to be subject to commercial regulations such as testing and record-keeping.

“This is not a bill saying that anything has been done unfairly,” McCann said. “We’re saying that we’re trying to keep something from being interpreted unduly in the future.”

* BND editorial…

Bathroom monitors with flashlights?

Illinois lawmakers are in no hurry to pass a state budget after 287 days, but they certainly are in a rush to be the second state in the nation to try to legislate bigotry regarding transgender teens. Those who fail to be effective leaders on the big picture items always seem to busy themselves micromanaging.

The bill is dead.

* Related…

* Care providers oppose Rauner program for elderly

* Tax Illinois drivers by the mile?: A new proposal to pay for fixing Illinois’ roads could use devices to track how far Illinois drivers have traveled and tax them by the mile. The plan from Senate President John Cullerton, a Chicago Democrat, is aimed at gasoline tax revenues that have fallen as drivers have bought more fuel-efficient cars.

* Editorial: School funding formula needs to change

* Pension buyout plan for state workers still being studied

* Chicago paying for youth job program that lost state funds