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Putting human faces on rule changes

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* Erickson

A hearing Tuesday will focus on the Rauner administration’s attempt to roll back an increase in the personal allowances received by developmentally disabled residents.

In 2014, the Legislature boosted the allowance to $60 per month. It returned to its previous levels of $30 and $50 on July 1.

After reading about the upcoming hearing, Barbara Thomas of Charleston got in touch.

Here’s what she wrote:

“Whether it’s $30 or $60, it’s not enough to cover personal expenses of anyone, whether the person has a disability or not. That so-called allowance is supposed to pay for much more than snacks, toiletries and entertainment. Individuals with disabilities must pay for clothing, dental care, podiatry, medication co-pays, psychiatric visits, and if there is money left (seriously), they will have money for snacks and entertainment.

“I have a son receiving residential services… I pay for my son’s dental care, give him spending money, buy his clothing, buy his bedding, etc. I do it willingly and with love. He is my son and deserves a quality of life that is more than ‘eats and sheets.’ The real question is what happens to the individuals who don’t have anyone to subsidize their care.”

* From a press release…

Gov. Rauner is making it official: His administration is amending the Illinois Administrative Code to slash the personal needs allowance for persons in developmental disability group homes from $60 a month to $50. A hearing is scheduled Tuesday.

Disability consultant Ed McManus today called the move “outrageous” and issued a plea to families, provider agencies and the public to oppose it.

“Is this what we have come to?” said McManus. “Our people with intellectual and developmental disabilities have no money of their own to take care of their personal needs. We’re talking here about shampoo, deodorant, a haircut, a movie, a cup of coffee. So the state for years has at least been allotting them $50 a month; in intermediate care facilities it has only been $30.

“Last year, the legislature increased the allotment to $60 for both group homes and intermediate care facilities; the statutory increase was for Fiscal Year 2015 only, with the expectation that the Administrative Code would be amended. And in March, Rauner’s Department of Healthcare and Family Services did just that—they revised the code to make the increase permanent—or so we thought. The increase had a cost of only $3 million a year out of a $30-billion-plus state budget. The allowance goes to 16,000 people.

“In late June, the Division of Developmental Disabilities issued an information bulletin stating that the allowance was being rolled back to the previous levels, effective June 30, the end of the fiscal year. This was clearly illegal, in view of the increases enacted in March. Now, four months later, the administration is finally at least following proper procedure for proposing an amendment to the code.

“Unfortunately, the governor and his staff have provided no coherent explanation for why they don’t think people with disabilities deserve the extra few dollars. Frankly, I didn’t think they’d stoop this low.”

The public hearing on the proposal will be held at 1 p.m. Tuesday at the Prescott E. Bloom Bldg., 1st floor conference room, Springfield.

posted by Rich Miller
Monday, Oct 19, 15 @ 12:46 pm

Comments

  1. Hi Rich,

    I just wanted to point out that this tiny little ‘haircut’ each of these disabled persons are receiving will only allow us to continue to offer free motorcycle training classes in Illinois. Perhaps since these folks are for the most part unemployed and not working they would enjoy coming out for a few hours of motorcycle training. I do believe most classes provide a small snack and water, so actually it would be a ‘twofer’. A nice afternoon out and a free meal.

    Bruce calls that a ‘win’!

    Best,
    ck!

    Comment by How Ironic Monday, Oct 19, 15 @ 12:52 pm

  2. So 16,000 disabled people are burdened further for 3 million in savings.

    The taxcut rollback happens and one person -Rauner - gets $700,000 in savings.

    Pretty messed up.

    Comment by hisgirlfriday Monday, Oct 19, 15 @ 12:54 pm

  3. I apologize for the lack of a professional sounding comment. This is about as mean as it comes and defies a true descriptive narrative..

    Comment by Mouthy Monday, Oct 19, 15 @ 12:56 pm

  4. I love how a man who made in excess of $50 million last year wants to take $10 bucks away from developmentally disabled persons.

    Comment by Stones Monday, Oct 19, 15 @ 1:02 pm

  5. Scrooge to Rauner: “Shame on you!”

    Comment by VanillaMan Monday, Oct 19, 15 @ 1:03 pm

  6. words fail….

    Comment by D.P.Gumby Monday, Oct 19, 15 @ 1:05 pm

  7. Is it 16,000 people on the program? $120/yr times 16,000 is $1.92 million.

    $7.3 million is being spent on video boards for the White Sox next year. Maybe on off days they can play some movies so some with disabilities can at least get some free entertainment.

    Comment by Jeff Trigg Monday, Oct 19, 15 @ 1:09 pm

  8. Eleni Bousis, head of the Greek American Rehabilitation and Care Centre, served on Governor Rauner’s transition committee.

    I wonder what she thinks?

    Comment by Juvenal Monday, Oct 19, 15 @ 1:11 pm

  9. Another attempt to extract a financial sacrifice from a vulnerable population from with little political influence. Particularly unconscionable in the context of hisgirlfriday’s prior post.

    Comment by kitty Monday, Oct 19, 15 @ 1:13 pm

  10. That was one of Rauner’s previous areas of business expertise-wringing money out of helpless nursing home patients.

    Comment by DuPage Monday, Oct 19, 15 @ 1:14 pm

  11. Just some context for folks, from someone who has an adult developmentally disabled family member - the state allowance isn’t their only source of spending money. Anyone who gets the state allowance also qualifies for social security disability, which is several hundred dollars a month.

    No one likes cutting social services. But this was a recent add on and the state is broke. We can’t afford our existing programs, let alone upgraded ones.

    Comment by So... Monday, Oct 19, 15 @ 1:21 pm

  12. As you do unto the least among us…

    I guess we know where you stand on that subject.

    Comment by Aldyth Monday, Oct 19, 15 @ 1:21 pm

  13. How much money will the governor’s reductions save the State?

    Comment by Me Monday, Oct 19, 15 @ 1:22 pm

  14. ==HI@12:52pm==

    I will do you one better. Have DD applicants be range aides (pays $160) or instructors (pays $390). My brother couldn’t be bothered to get his $20 deposit (for taking the course) back.

    http://www.startseeingmotorcycles.org/Job_Opportunities.aspx

    Comment by Jocko Monday, Oct 19, 15 @ 1:22 pm

  15. Pain w no purpose or plan.

    Drivin’ value for the taxpayer?

    Comment by Langhorne Monday, Oct 19, 15 @ 1:23 pm

  16. “The real question is what happens to the individuals who don’t have anyone to subsidize their care.”
    That is a very good question.

    Comment by Me Monday, Oct 19, 15 @ 1:23 pm

  17. How many of these examples do we need to see before we all understand this simple fact:

    HE.

    DOES.

    NOT.

    CARE.

    You can despise Rauner for not caring about people’s suffering (”He’s cruel!”), or you can admire Rauner for not caring about people’s suffering (”He’s Tough!”), but we’re long past the point where you can argue about whether Bruce Rauner cares about people’s suffering.

    He doesn’t.

    – MrJM

    Comment by @MisterJayEm Monday, Oct 19, 15 @ 1:28 pm

  18. Shameful.

    Comment by Because I said so... Monday, Oct 19, 15 @ 1:28 pm

  19. MrJM - well said.

    Comment by illini Monday, Oct 19, 15 @ 1:30 pm

  20. When I was working as a hospice chaplain I served a very elderly woman named Virginia who got the 30 dollar amount. That’s all she got. In a very crappy nursing home, one of the few joys she had was having the staff buy her cans of Pepsi and candy out of the vending machine. It’s hard for me to imagine an existance where Pepsi and candy are as good as it’s gonna get.

    Comment by Honeybear Monday, Oct 19, 15 @ 1:35 pm

  21. “The real question is what happens to the individuals who don’t have anyone to subsidize their care.”

    I can tell you. When there’s no family or friend who will help, they do without a lot of things. Their clothes are never new, it’s all donations or resale shops. Their bedding is hand-me-downs. Christmas presents come from an angel tree. Going to a movie is at agency expense (so it doesn’t happen often). There are no vacation trips, ever. If you break your CD player, you do without until you can save the money to buy another one. Toothpaste, toothbrush, shaving cream, deodorant, etc. are out of a common purchase from the Dollar Store that we keep on the side.

    Some of us staff pitched in to buy some decent bras for one woman.

    There are prescriptions for treatment creams for skin breakdowns that Illinois won’t pay for. We ask the community to pitch in for a medical fund for that. We have a few people with cerebral palsy who have custom wheelchairs that are made specifically for their bodies. The state isn’t paying those bills, so the companies that make them aren’t doing business with our folks. If you have private insurance, that’s great. Otherwise, we use duct tape for repairs.

    You can tell a difference between those who have family who will buy them what they need and those who have no one but the good will of the community. A lot of the ones who have to rely on the state and strangers know that they will never have a lot of things or experiences that others have.

    Comment by Aldyth Monday, Oct 19, 15 @ 1:37 pm

  22. It’s the hostages that Rauner has no feeling for, but feels his agenda is worth what pain other will endure until Rauner gets… what Bruce Rauner wants.

    How does the President of Ounce of Prevention feel about this or… the other dozens of heartless moves.

    It’s the Rauner Agenda that keeps Bruce warm…

    Comment by Oswego Willy Monday, Oct 19, 15 @ 1:43 pm

  23. ===HE DOES NOT CARE.===

    It’s worse than he doesn’t care. Nobody is forcing him to make rules changes. You saying that he doesn’t implies some sort of aloofness. He is not aloof. These are planned cuts out of malice, not out of a lack of care. Plain and simple; if you can’t pay for childcare, mental wellness, drug addiction services, or anything else involved with the downtrodden, you’re not worthy of help in his eyes.

    Comment by Ducky LaMoore Monday, Oct 19, 15 @ 1:46 pm

  24. This has Donna A’s “superstar” fingerprints all over it.

    What a great way to save some money. Really nice.

    Comment by Frenchie Mendoza Monday, Oct 19, 15 @ 1:48 pm

  25. We’re unlikely to read about this in the Trib.

    Comment by JackD Monday, Oct 19, 15 @ 1:49 pm

  26. From Sunday’s SJR, Bernie’s column http://www.sj-r.com/article/20151017/OPINION/151019615/?Start=2:

    Boo!

    As if state government isn’t scary enough these days, there will be Halloween at the Executive Mansion from 2 to 4 p.m. Oct. 31. OK, this may not be that scary. The event is hosted by Rauner and his wife, DIANA, according to 6,300 fliers printed in-house by the state and distributed to school kids. Children in kindergarten through fifth grade are invited to trick-or-treat and should enter the Fourth Street gate of the mansion, 410 E. Jackson St.

    “The candy and decorations have been generously donated, and a number of schools have assisted in creating decorations,” Kelly said, adding that the printing was at “minimal cost to raise awareness for this community event.”

    The Springfield-based Illinois Association of Wholesale Distributors, which largely represents companies that serve convenience stores, helped facilitate the candy donations from various companies, the governor’s office said.

    ******

    Here’s a suggestion, every time the “superstars” come up with a plan to save the state money, they line up people in the private sector to “underwrite” the cuts. Hey, if they can do it with Halloween candy for a 2 hour time frame, surely they can find a way to raise $.32 per day per person in these programs. Maybe lottery tickets? /s

    Comment by Anon221 Monday, Oct 19, 15 @ 1:49 pm

  27. Bless you, Aldyth.

    Comment by yinn Monday, Oct 19, 15 @ 1:50 pm

  28. I do believe Bruce could squeeze blood from a turnip. Literally.

    Comment by How Ironic Monday, Oct 19, 15 @ 1:52 pm

  29. The thing is, none of this is part of a an actual “fiscal responsibility” plan. This is the most fiscally irresponsible governor in my lifetime.

    End welfare-to-work programs, whack the developmentally disabled, yet the FY16 deficit is through tne roof, and the state will run out of money for mandated programs in spring because of the governor’s “strategy” and refusal to deal with reality.

    By the way, make sure the Fortune 500 get their handouts. Makes for “job-creating” press releases.

    Edgar said it’s the worst he’s seen in 47 years. I’m sure he didn’t say that lightly, and I’m certain he’s right.

    He’s not a trash-talker, and his words in recent days are about as rough as you’ll get from him for public consumption.

    Comment by Wordslinger Monday, Oct 19, 15 @ 1:53 pm

  30. magnifying glass and ants

    Comment by LizPhairTax Monday, Oct 19, 15 @ 1:53 pm

  31. Aldyth - there are 2 group homes in my small village and I have to admit that I do not know what the realities are but am sensitive to the issues being raised.

    Stating the issues well, and with the perspective of someone actually being involved.

    Comment by illini Monday, Oct 19, 15 @ 1:58 pm

  32. In most communities every year, one or more philanthropic groups gets together school supplies for area students- Stuff the Bus/Backpack. This would be a good model for those communities that have group homes and nursing homes. Theatres, coffee shops, restaurants could also issue gift coupons for the residents. Perhaps this is already being done, but I’m sure it could be replicated across the state. As illini said in response to Aldyth’s post, most people are unaware of the minimal “allowances” issued to residents until they have a family member (or they themselves) are in that situation. That said, Rauner’s latest cost savings is… well it can’t be printed here.

    Comment by Anon221 Monday, Oct 19, 15 @ 2:07 pm

  33. IL GOP Chair Tim Schneider brushes off Edgar’s comments as “one person’s opinion.”
    This is definitely not Edgar’s GOP.
    Bet lots of GOP rank-and-file are quakin’ in their boots.

    Comment by Austin Blvd Monday, Oct 19, 15 @ 2:15 pm

  34. I guess the “superstars” in the Executive Branch and Frat Boys are doing their jobs well, but we are talking about real people who should matter!!!

    Yet obviously they do not matter, and they are nothing but pawns in the games that BVR is playing, while pursuing his delusional agenda and misguided priorities.

    Well stated Wordslinger ( and thank you for having an identifiable handle ).

    Comment by illini Monday, Oct 19, 15 @ 2:17 pm

  35. … and thank you for having an identifiable handle ).

    ***
    If my handle has fallen into the Anonymous bashing today, it does have a specific meaning to me, and was not chosen randomly:)

    Comment by Anon221 Monday, Oct 19, 15 @ 2:26 pm

  36. RAUNER paid $2.8 mil in state taxes. He could pay for it

    Comment by Langhorne Monday, Oct 19, 15 @ 2:28 pm

  37. Anon221 - I was not referring to you.

    I was referring to all those others who refuse to select a more identifiable handle. You are OK

    Comment by illini Monday, Oct 19, 15 @ 2:43 pm

  38. Thanks illini:)

    Comment by Anon221 Monday, Oct 19, 15 @ 2:45 pm

  39. === I love how a man who made in excess of $50 million last year wants to take $10 bucks away from developmentally disabled persons. ===

    But it is only in order to make Illinois “the most compassionate state in the Union.”

    Comment by nona Monday, Oct 19, 15 @ 3:39 pm

  40. == Gov. Rauner is making it official: His administration is amending the Illinois Administrative Code to slash the personal needs allowance… ==

    Says the dip-s with a $57 Million income. And apparently, not one bit ashamed. Disgraceful. As usual.

    Comment by sal-says Monday, Oct 19, 15 @ 4:00 pm

  41. nona and sal-says - well stated, but what are we to do? Like the snark in your comments.

    Comment by illini Monday, Oct 19, 15 @ 4:18 pm

  42. So sad and shameful. He’s a machine not a man.

    Comment by Flynn's Mom Monday, Oct 19, 15 @ 4:52 pm

  43. Wordslinger @1:53. Couldn’t agree with you more on Fortune 500 reference. This is what makes the Raun man a hypocrite. He is not a true conservative. He is just another pork barrel politician taking his turn at the trough.

    Comment by Blue dog dem Monday, Oct 19, 15 @ 8:59 pm

  44. If I die while I’m still a resident of Illinois, my disabled daughter will be forced to live in a group home. I’ve fought very hard against placing her in congregate care. As a thought experiment, she and I went shopping yesterday and picked out only the bare necessities for her first month’s hypothetical stay in a group home. We bought items like soap, shampoo, conditioner, toothbrush, toothpaste, a bath towel, kleenex, feminine supplies, one T-shirt, one package of underwear, q-tips, etc. There was nothing “fun” in the shopping cart — no snacks, movies, or music — and we didn’t even try to buy sheets, blankets, or curtains. We bought her typical brands and only purchased what she would normally use or buy in one month’s time. Nothing fancy. The total at the register came to $99. I’m fairly certain that neither Rauner nor anyone in his administration would want to live that way that they expect people like my daughter to live.

    Comment by Dome Gnome Tuesday, Oct 20, 15 @ 5:59 am

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