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."
".....no 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.
Stepping down now. 
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."
".....no 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.
Stepping down now. 
