Illinois finally hits rock bottom

Discussion in 'The Watercooler' started by slsh, Mar 25, 2008.

  1. slsh

    slsh member since 1999

    It was simply a matter of time. One only has to live here with a developmentally disabled child to know this.

    I've always watched the State of the State report re: daughter. It's really quite shocking to look at per capita income versus services. IL has a decent per capita income but we are now 51st in terms of services for folks with daughter. If we run true to form, the vast amount of funding will continue to be spent on those individuals with daughter who are unnecessarily institutionalized (state convenience) - I think we were 7th last year on $ per instutionalized person. What that means is the only way you will get services is if you remove the person with daughter from a community and put them in a holding tank.

    It's funny... the sped co-op staff don't understand my deep-seated anger over his educational segregation and exclusion for 10 years. The transition specialist, who fancies herself an "advocate" for those with disabilities, doesn't understand why I adamantly refuse to fill out the PUNS (18-page survey for those with daughter who might at some point need rehab services, PCA, funding from the state, etc.). Filling out the PUNS is simply the result of a law suit a few years ago by disability rights advocates because the state of IL wasn't keeping track of who they weren't serving. Now they can keep track, but still fail to provide services. I can't help but wonder how much $$ is being spent on the clerical staff who "help" us fill out this form (because we're not allowed to fill it out by ourselves), crunch the numbers, and then return *next* year to "help" us fill it out again (because it has to be done annually, in case ... I don't know, there's a miraculous cure for CP or MR???).

    "If you are, or will ever become, the parent of a child with developmental disabilities such as mental retardation, autism or Down syndrome, you may want to consider moving to another state."

    " state treats its citizens with special needs more callously than ours."

    I've always said they ought to have warning signs at the state border - an accessibility symbol with a line thru it.

    I know, I should do something about it rather than just kvetch. But when you've run head-on into the wall of ignorance that exists in this state when it comes to inclusion and *ability* for a solid decade, you finally figure out the best solution is simply to cut and run because there are some things you just cannot change. It's a shame because this state is missing out on the privelege of having my son be a contributing included member of it's citizens.

    :soapbox: Stepping down now. ;)
  2. Big Bad Kitty

    Big Bad Kitty lolcat

    *steps onto the recently vacated soapbox* :soapbox:

    Oh, but you should see our TOLLWAYS!

    Blah-gojevich wasted no time in pouring millions of dollars into our tollways, which by now should have been freeways.

    Good to see that our state money is being well spent.

    It's hard to do anything besides kvetch. Maybe wretch?
  3. Star*

    Star* call 911

    ...Well ya gotta have BETTER roads to get all the daughter to the daughter holding tanks - couldnt' have a state car hit a pot hole.


    So ladies - what are you going to do about it??
  4. slsh

    slsh member since 1999

    Move. Seriously. Retirement is in 17 years. Until then, I just pray our backs hold out and we can figure out a way to fund his post "education" activities ourselves.
  5. flutterbee

    flutterbee Guest

    We can cross our fingers and hope that Illinois will be embarrassed enough about this to get off their duffs and do something about it.
  6. dreamer

    dreamer New Member

    I had major difficulty when our local county day treatment program went to ONLY accepting court ordered substance abuse and noone else in. I had more difficutlty when my oldest had SASS services, yet while she was INPATIENT at psychiatric hospital- they "graduated her out", said she had met her goals. Yes they KNEW she was in psychiatric hospital at the time. And once SASS was pulled, so was WRAP, and becuz SASS and WRAP were pulled, they pulled her therapist. When her therapist got pulled, they also pulled psychiatrist becuz here our psychiatrists only write the Rx for medications, it is therapist who actually spent time with patient.

    I live by the border, and I cannot tell you how many of the parents with kids with any type of disability moved across the border. I can tell you it has been a LOT.
    I used to think it was only a problem for mentally ill people, but, I have since found out how bad it is for any type of disability.

    I also learned that even when there ARE programs supposedly in place, they really are often simply something to hold up to the unknowing public. The WRAP program in our county, at the time we had it? The people met with you, filled out papers and little else ever happened. Respite? LOL- I worked for a respite provider. They told clients they would send a worker, but truth was they did not schedule anyone to send, then when client would call to complain that noone showed up, the agency would scramble for excusses- "oh they must have gotten lost en route"
    Medicaide? Maybe in some parts of the state you can find someone to accept it, but not here in my county.

    The whole system is broken. I am surprised they finally ADMIT it. It has been a mess for a long long time.

    Oh yeah, I have wanted to move. Many times, for a long time......sadly, financially it simply was not ever possible. Where we bought our house did not appreciate in value, and our social security never provided us an opportunity to cope with the financial situation. ANd husband and my illness did not facilitate a move phsyically.
    am I bitter? yup. My difficult child is a brilliant person, but I alone cannot bring her to fruition. ANd I keep looking at my son..such a creative mind, such possibilities.
  7. dreamer

    dreamer New Member

    you know, there were similar difficulties with Illinois military disabled veterans? Problems with their benefits.

    I have advocated, lobbied, testified before committeess and forums etc to try to bring about change. I have tried to help bring all this kind of issues into the eyes of the general public. I do like to think I have affected some change here and there along the way.

    My school district finally has begun a new program, I posted about it recently in Special Education forum. and our military vets did finally get an investigation going re their benefits.

    It floors me to get my real estate tax bill here in my county, chokes me to see who gets how much......and then to know how our school and county health dept operate. And then in the fall to register easy child at (public) school and see how much that costs.