Illinois Residents of State-Licensed Facilities Never Received Increase In Personnel Care Allowance

Advocates for developmentally disabled and mentally ill residents of state-licensed facilities fought for years to win an increase in the small monthly stipend those individuals are allowed to keep for their personal needs.

article by Mark Brown for the Chicago Sun-Times | November 13, 2017                                
They appeared to have prevailed in July with approval of a new state budget and an income tax increase to help pay for it.

Legislators set the new “personal needs allowance” at $60 a month, up from $50 for some individuals and $30 for others.

But more than four months later, some of the would-be recipients say they still aren’t receiving the modest increases owed them and haven’t received a good explanation for why not.

The failure to pay the increase appears to be affecting only residents of nursing homes that care for the mentally ill, not the developmentally disabled, according to the advocates.

Organizers with the community group ONE NorthSide say they have identified at least three long-term care facilities for mentally ill individuals in Chicago where residents say they are still waiting for their raise.

One of those is The Clayton Residential Home in Lincoln Park, where resident Larry Bender Jr. said administrators have put the blame on the state.

Bender said residents of The Clayton received the extra $30 in September, but not in October or November. And he said they are still looking for a retroactive increase for July and August.

The personal needs allowance is intended to be exactly that — the amount of money that individuals residing in certain state licensed facilities are allowed to keep from their Social Security disability checks — of about $735 monthly — to spend on their personal needs. The rest of that money goes directly to pay for their care.

Bender, 46, who has been diagnosed with schizoaffective disorder, said he needs the extra $30 to buy clothing or occasionally something to eat beyond the nursing home’s daily fare.

“Some nice bacon, scrambled eggs . . . a hamburger,” Bender told me wishfully, before mentioning personal hygiene products like soap, deodorant and toothpaste.

The personal needs allowance is basically the only money these folks get to spend in a month, said Sam Wickham, a community leader for ONE Northside’s mental health justice team.

“You need a birthday card, it comes out of that money,” she said.

Wickham, who suffers from severe depression and PTSD herself, said she has never lived in a nursing home-type setting but has been told by friends that the low personal needs allowance was one reason many of them turn to panhandling.

“It was dehumanizing to them,” Wickham said.

I could not get a return call from The Clayton, which I’m told is a decent enough place, so I don’t know where the fault lies.

More than 400 mentally ill individuals live at the three facilities that haven’t paid the increased allowance. Three other facilities surveyed by ONE Northside are paying the new higher amount.

The affected facilities are called Specialized Mental Health Rehabilitation Facilities, which is only worth mentioning because of the acronym, SMHRF, which is pronounced “smurfs” by those in the field.

In an August 29 memo, the Illinois Department of Human Services Director Felicia Norwood notified all the service providers for the developmentally disabled and mentally ill, including the smurfs, that the increase to $60 was effective July 1.

Advocates say they are concerned there appears to be no clear plan for facilities to come up with the back pay.

I realize that the developmentally disabled recipients of this allowance are generally a much more sympathetic group to the public than those suffering from mental illness. When I first went to bat on this subject, it was for their benefit.

But the mentally ill folks in these facilities have some seriously debilitating issues of their own, and they’ve waited long enough.
https://chicago.suntimes.com/chicago-politics/developmentally-disabled-mentally-ill-allowance-increase/

Roman Catholic Priest Charged with Sexual Assault of Developmental Disabled Center Resident in Illinois

Richard Jacklin, 65, booking photo via Illinois State Police.

 (Illinois State Police)

by the Associated Press | Nov. 2, 2017                                                                                            
ILLINOIS - Bond has been set at $1 million for a Roman Catholic priest accused of sexually assaulting a resident of a developmental center outside Chicago.

The Rev. Richard Jacklin was arrested by Illinois State Police on Tuesday for the alleged assault on the resident at Shapiro Developmental Center in Kankakee.

Kankakee County State's Attorney Jim Rowe on Thursday told the judge a nurse walked in on Jacklin performing a sex act on a 39-year-old man. The alleged victim has been a patient at Shapiro since 2010 and is paralyzed and has an intellectual disability.

The 65-year-old Jacklin has been charged with criminal sexual assault by force and sexual misconduct of a person with a disability.

The Diocese of Joliet says Jacklin was ordained June 2, 1984, and has been assigned to Sacred Heart Catholic Church in Goodrich since 2005.

'I Am a Man With Down Syndrome and My Life Is Worth Living' - Congressional Testimony

Congressional testimony that illuminates what a developmental disability means—and doesn’t mean

article by CONOR FRIEDERSDORF for The Atlantic | Oct 30, 2017                                       

Last week, the actor, Special Olympian, and advocate Frank Stephens gave this testimony to Congress: “I am a man with Down syndrome and my life is worth living.”

In fact, he went farther: “I have a great life!”

For those conceived with his developmental disability, it is the best and worst of times. “The life expectancy for someone born with Down syndrome has increased from twenty-five in the early 1980s to more than fifty today,” Caitrin Keiper writes in The New Atlantis. “In many other ways as well, a child born with Down syndrome today has brighter prospects than at any other point in history. Early intervention therapies, more inclusive educational support, legal protections in the workplace, and programs for assisted independent living offer a full, active future in the community.”

But as she goes on to explain, “the abortion rate for fetuses diagnosed with Down syndrome tops ninety percent.” In Iceland, nearly every fetus with the condition is killed. CBS News reports that “the United States has an estimated termination rate for Down syndrome of 67 percent (1995-2011); in France it's 77 percent (2015); and Denmark, 98 percent (2015). The law in Iceland permits abortion after 16 weeks if the fetus has a deformity––and Down syndrome is included in this category.”

Many of those living with Down syndrome are understandably dismayed at the implication that their extra chromosome renders their life more trouble than it is worth.

That’s the context for Stephens’s full testimony, which urges allocating federal money to research that would help people with Down syndrome, rather than proceeding as though the best way to address it is prenatal testing and selective abortion:

# # #
Mr. Chairman and members of the committee, 

Just so there is no confusion let me say that I am not a research scientist. However, no one knows more about life with Down Syndrome than I do. Whatever you learn today, please remember this: I am a man with Down Syndrome and my life is worth living.

Sadly, across the world, a notion is being sold that maybe we don't need research concerning Down Syndrome. Some people say prenatal screens will identify Down Syndrome in the womb and those pregnancies will just be terminated.

It's hard for me to sit here and say those words.

I completely understand that the people pushing this particular “final solution” are saying that people like me should not exist. That view is deeply prejudice by an outdated idea of life with Down Syndrome.

Seriously, I have a great life!

I have lectured at universities, acted in an award-winning film and an Emmy-winning TV show, and spoken to thousands of young people about the value of inclusion in making America great. I have been to the White House twice––and I didn't have to jump the fence either time.

Seriously, I don't feel I should have to justify my existence, but to those who question the value of people with Down Syndrome, I would make three points.

First, we are a medical gift to society, a blueprint for medical research into cancer, Alzheimers, and immune system diroders. Second, we are an unusually powerful source of happiness: a Harvard-based study has discovered that people with Down Syndrome, as well as their parents and siblings, are happier than society at large. Surely happiness is worth something? Finally, we are the canary in the eugenics coal mine. We are giving the world a chance to think about the ethics of choosing which humans get a chance at life. So we are helping to defeat cancer and Alzheimers and we make the world a happier place. Is there really no place for us in the world?

Is there really no place for us in the NIH budget?

On a deeply personal note, I cannot tell you how much it means to me that my extra chromosome might lead to the answer to Alzheimers. It's likely that this thief will one day steal my memories, my very life, from me. This is very hard for me to say, but it has already begun to steal my mom from me. Please, think about all those people you love the way I love my mom. Help us make this difference, if not for me and my mom then for you and the ones you love. Fund this research. Let's be America, not Iceland or Denmark. Let's pursue answers, not "final solutions." Let's make our goal to be Alzheimer's free, not Down Syndrome free. Thank you.

# # #

Testimony like this tends to circulate most widely in anti-abortion circles, but both opponents and advocates of abortion rights should be able to agree on its value for parents.

Parents who carry a fetus with Down syndrome to term, or who are conflicted about whether or not to do so, will almost certainly speak with a medical professional, and perhaps with a counselor or religious adviser. But they are unlikely to hear from an adult with Down syndrome—and perhaps unaware that many are loving their lives, bringing joy to others, and giving themselves to their communities. If those truths were more widely known, I suspect the odds of making it from conception to a long life with Down syndrome would be much higher.
https://www.theatlantic.com/politics/archive/2017/10/i-am-a-man-with-down-syndrome-and-my-life-is-worth-living/544325/

Illinois Legislators Rated on Support for Medicaid Home and Community Based Services for Developmental Disabilities

   Springfield, Illinois - September, 2016 - Illinois Parents of Adults with Developmental Disabilities (IPADD) has released its first scorecard for Illinois legislators, believing it to be the first disability-specific legislative report published in the state.

The scorecard, titled ICLR (Illinois Community Living Report), analyzed ten bills from the 2016 Spring Session of the Illinois 99th General Assembly. Bills were chosen for their potential to help or hinder Illinois citizens with developmental disabilities access more included lives in their homes and communities. Rep. Carol Ammons, Rep. Will Guzzardi, and Rep. Elaine Nekritz achieved a perfect score of 100% on the scorecard. All three representatives have received IPADD’s “Community Living Advocate Award.”

“We are grateful to Reps. Ammons, Guzzardi, and Nekritz for having the courage to support good policy which directly impacts the lives of Illinois citizens with developmental disabilities,” said Deb Hamilton, IPADD’s Legislative Affairs Director. Hamilton added: “The scorecard also reveals a disappointing level of engagement by many of the top leaders, including Governor Rauner and Speaker Madigan, who each scored only 50% on the report. This is nothing short of negligence and that type of policy neglect will no longer go unscrutinized by the public.”

IPADD believes "every person with a developmental disability, supported appropriately, can live a safe, meaningful, and connected life in their home community. The group outlines three key goals for Illinois government, which include:

1."Commit immediately to raising the state fiscal investment in Home and Community-Based Services (HCBS) from our current rank of 46th in the nation...

2.Shorten, and eventually eliminate, the PUNS (Prioritization for Urgency of Need for Services) waiting list...

3.Make equitable rate adjustments for community services across regions, settings, and HCBS waivers..."

Download Illinois Community Living Report (PDF)

Read article on NPR Illinois and listen to interview with Deb Hamilton.

IPADD was co-founded in 2006 by Laurie Jerue and Ellen Garber Bronfeld, both mothers of adults with a developmental disability. IPADD has since grown to more than 1,500 members. From the beginning, the organization has been grounded in the philosophy that every person with a developmental disability can lead safe, meaningful, and connected lives in their community.

source: IPADD press release

Developmentally Disabled Patients Continue To Die Under State of Georgia Care

The state of Georgia continues to have developmentally disabled patients die while under state care, with 160 deaths in the past fiscal year, according to a court-appointed observer.

article by Tom Corwin for The Augusta Chronicle | Oct 7, 2017                                                      

The state often overlooks potential neglect or mistreatment uncovered by its own investigators, such as a woman who drowned in a bathtub this year, independent reviewer Elizabeth Jones said.

The U.S. Department of Justice sued Georgia over the conditions in its state hospitals, and the Georgia Department of Behavioral Health and Developmental Disabilities agreed to a settlement in 2010 that requires moving patients from state institutions to the most appropriate integrated setting, and to provide greater services and support for those patients in community settings. Jones is monitoring the state’s compliance with those provisions and reporting to the U.S. District Court in Atlanta on the state’s progress.

Site visits to current providers also found some are employing poorly trained and supervised staff. One patient, referred to only by the initials B.B., ended up hospitalized and recovering in a nursing home after she refused to eat and lost weight due to poor care in the home.

“The apparent indifference shown by the residential staff was equally disturbing,” Jones noted. With another patient referred to as J.B., the nurse consultant found the patient apparently heavily drugged, noting the man “was slouched down in the chair with his head hanging down” and had a black eye the staff could not explain.

An Augusta Chronicle investigation in 2015 found nearly 1,000 deaths in two years among patients in the community under the state’s care, and the state later agreed to a more robust system for investigating and reporting deaths. In fiscal year 2017, there were 160 deaths and 68 investigations, but “the findings and recommendations in certain investigations raise concerns about thoroughness, and, even more importantly, the legitimacy of the conclusions drawn from the investigation,” Jones wrote.

One glaring example is a patient known as C.Bi who drowned in her bathtub Feb. 17 despite a care plan that required caregivers to keep her in “line of sight at all times,” the report said. Yet there was no finding of neglect, Jones noted, despite reports that the staff had left the patient at other times to go to McDonald’s and “conflicting statements” from the staff about what they were doing that day.

“Multiple elements of this death are consistent with a finding of neglect,” Jones wrote. “It is disturbing that that conclusion was not reached.”

Some investigations are not completed yet, including one from January where “there was a concern about neglect” and another from June in a home where three patients have died since 2014. Jones wrote she “has identified five agencies that require additional, more intensive review due to the number or circumstances of unexpected deaths.”

The department would not answer detailed questions about her report, but said Jones “continues to provide reflections and recommendations that are valuable to DBHDD,” Press Secretary Angelyn Dionysatos said in a statement. “As we progress toward the end of the extension agreement, DBHDD is focused on sustaining the significant system gains that have been achieved and addressing remaining areas of required compliance.”

Because the state failed to meet its original deadline, the settlement agreement has been extended and the latest deadline is June 2018. As of June 30, there were 167 patients still in the Gracewood wing of East Central Hospital in Augusta and 366 developmentally disabled patients to be moved overall, according to Jones.

With the state moving 26 patients in fiscal year 2016 and 29 in fiscal year 2017, moving all of the patients to community settings “would take the state a dozen years or so,” she noted. A “substantial barrier” to those community placements is a lack of appropriate providers, but the state has failed to recruit a “single new provider” to provide care in those community settings since agreeing to a recruitment plan, Jones said.

Staff writer Sandy Hodson contributed to this report.

http://chronicle.augusta.com/news/2017-10-07/georgia-continues-see-developmentally-disabled-patients-die-under-state-care

Missing Texas Developmentally Disabled Toddler Left Near Coyote-Infested Alley As Punishment by Father

RICHARDSON, Texas - The father of a missing 3-year-old in North Texas allegedly left his daughter alone in an area wrought with coyotes as punishment for not drinking her milk, according to charging documents.

Police in Richardson, Texas, a suburb of Dallas, issued an Ambert Alert for Sherin Mathews, who was reported missing early Saturday morning. Her father, Wesley Mathews, 37, was later arrested and has been charged with abandoning or endangering a child.

According to investigators, Wesley Mathews said in an interview that he told Sherin, who has a developmental disability, to stand near a large tree outside his home in the wee hours of the morning after she refused to drink milk. He then said that he went back 15 minutes later and could not find his daughter.

Investigators said the tree is close to an alleyway. Charging documents allege Wesley told the responding officer that "he knew coyotes had been seen in the alley where he left his daughter." The father didn't notify police that his daughter was missing until about five hours later, according to the affidavit.

Sherin Mathews has not been seen since. At the time of her disappearance, she was wearing black leggings, a pink shirt and pink sandals.

It's not clear why the father chose to punish the girl in the middle of the night.

Anybody with information about her whereabouts should contact Richardson police.

originally reported by ABC13 News Houston, Texas | Oct. 9, 2017    

The Associated Press contributed to this report.

                                                                       

Lawsuit over Tennessee’s Treatment of People with Intellectual and Developmental Disabilities, Dismissed

NASHVILLE, TENN. - Sept. 9, 2017 - A judge on Friday dismissed a longstanding lawsuit over Tennessee’s treatment of people with intellectual and developmental disabilities, ending federal oversight of state programs.

Gov. Bill Haslam lauded the dismissal of the case by Judge Waverly Crenshaw of Federal District Court. Governor Haslam said Tennessee has “fundamentally changed the way we serve some of our most vulnerable citizens.”

The Justice Department and the People First of Tennessee sued over conditions at three state facilities: Clover Bottom Developmental Center in Nashville; Greene Valley Developmental Center in Greeneville; and Nat T. Winston Developmental Center in Bolivar. A separate lawsuit concerning the Arlington Developmental Center was dismissed in 2013.

All four developmental centers have since been closed, with the state directing thousands of people with intellectual and developmental disabilities to home- and community-based care.

The state closed the 90-year-old Clover Bottom Developmental Center late in 2015. At its peak in the 1960s, it housed 1,500 people.

That’s when Debra K. Payne, now the commissioner of the Department of Intellectual and Developmental Disabilities, first worked at the facility as a 14-year-old volunteer.

“To walk in the halls and to see countless people in the institutions lined up against the walls, nothing to do all day,” Ms. Payne said of her experience in 1968. “Staff were at a minimum at that time. They were desperately trying to feed people, keep them clean.

“That was the minimum of care then,” she said. “It is so different today.”

The Haslam administration estimates that it has cost the state more than $300 million to make the changes needed to bring the court supervision of disabilities programs in Tennessee to an end.

The Justice Department praised the cooperation of state officials and advocates in resolving the case.

“Together, we have pursued this case to enforce the important rights of people with disabilities and to treat these individuals with dignity,” John M. Gore, an assistant attorney general, said in a release.

New York Times article on Sept. 9, 2017

https://www.nytimes.com/2017/09/09/us/judge-dismisses-suit-on-care-of-the-disabled.html?mcubz=3&_r=0

State of Massachusetts Seeks Changes After Abuse of Mentally Disabled Patient at Judge Rotenberg Center

Investigators say two employees beat, whipped and spat on a restrained patient.

article by Sean Philip Cotter for The Patriot Ledger | June 22, 2017                                                      
The state recommends that the Judge Rotenberg Educational Center take a hard look at its policies after two now-former employees were charged with assaulting a patient.

The Massachusetts Disabled Persons Protection Commission investigation into the matter substantiated the abuse claims, according to the investigation report obtained by The Patriot Ledger.

The two ex-employees are charged with striking a tied-down mentally ill man with a belt and their hands on multiple occasions, as well as spitting on him at a Randolph residence owned by the Canton-based center.

“That (the two employees) acted with so little regard to (the victim’s) dignity and his behavioral program for such a period of time suggests that staff is either insufficiently trained or supported to carry out complex treatment programs for individuals with disabilities,” the commission wrote in its report.

The investigators found that the two employees had been doing this from time to time for nearly a year, according to the report. The commission wrote that the length of time this went undetected was concerning.

″(The Rotenberg Center) should review and revise this system to ensure the best protection for students and staff,” the report states.

No one from the center returned a message seeking comment Thursday afternoon.

Emil DeRiggi, the deputy executive director of the commission, said that the recommendations in the report are non-binding, but facilities generally acquiesce to them.

“They are typically followed pretty closely by whoever the recommendations are made to,” he said on Thursday.

The commission says that the main goal of any investigation the commission does is to determine if there’s further harm possible to any victims, and how further harm can be prevented.

As is normal protocol, the commission sent the completed report to the state Department of Developmental Services, which is one of the licensing agencies for the Rotenberg center.

No one from that department could be reached for comment Thursday.

The two employees charged are Mohamed Tarawally, 36, of 200 Hancock St., apartment 33, Boston, and Claude S. Guerrier, 24, of 67 Weston St., Brockton. Rotenberg suspended and then fired the two men after the allegations surfaced. They are both due to be arraigned in Norfolk County Superior Court at 2 p.m. Friday on assault charges.

Police say that Tarawally threatened, punched and hit with a belt an adult male patient. Guerrier shoved the patient, threatened him and spat on him, according to police.

Randolph police wrote in their report that video surveillance in one resident’s room in the facility at 20 Country Club Drive showed that one or the other of the men, both working the overnight shift, had committed these crimes at various times in October and November.

The Judge Rotenberg Educational Center has been the center of controversy for years, mostly over its use of electrical shocks on some of its patients as behavior-modification therapy. The private center, which provides various educational and behavioral services, was using skin shocks on 55 of the center’s 235 patients as of 2014.

That year, the federal Food and Drug Administration recommended that the center stop using the shocks; the FDA became involved after years of complaints from disability-rights groups and even a U.N. report that the shocks are tantamount to torture. Rotenberg has settled lawsuits in the past regarding the use of electric shocks.
http://www.patriotledger.com/news/20170622/state-finds-abuse-seeks-changes-at-judge-rotenberg-center

Illinois Still Fails To Support Disability Services, 2017 Report Finds

SPRINGFIELD, Ill. • A federal court monitor is criticizing Illinois for failing to ensure that people with developmental disabilities receive adequate support within their communities for a second year in a row.

By KIANNAH SEPEDA-MILLER | Associated Press | January 29, 2017  

The monitor's annual report, issued last week, says a lack of state funding to raise caregiver wages has created unprecedented shortages of workers who assist developmentally disabled residents when they move out of institutions and into apartments or group homes. The services include everything from eating and hygiene to learning life skills.

The report expanded on a similar finding last year. But the Illinois Department of Human Services said in a statement that it disagrees with the conclusion. The agency insists the state continues to meet requirements laid out in a federal decree issued in 2011 after civil rights groups sued Illinois for failing to comply with a 1999 Supreme Court ruling that unjustified institutionalization constitutes discrimination.

The decree details what Illinois must do to provide community support for the developmentally disabled.

"We remain committed to the tenets of the (decree) and look forward to suggestions from all stakeholders on ways in which we can serve individuals with developmental disabilities more effectively," said Meredith Krantz, a spokeswoman for the department.

The issue will be discussed when plaintiffs, including the American Civil Liberties Union and Equip for Equality, meet with state officials before a Feb. 10 court date when the parties next make their case to a judge.

State funding for wage increases stalled almost a decade ago at about $9 per hour, which would place many caregivers and their families below the federal poverty level. Medicaid matches state wage rates, but states must raise wages first to secure a higher federal contribution.

"We can't compete even with fast food restaurants or retail," said Kim Zoeller, president of the Ray Graham Association, a DuPage County-based community service provider. "It's truly a crisis."

The report commends the state for reaching benchmark goals for the number of people awaiting services who've left institutions or family homes to live on their own or in group residences. But it found Illinois out of compliance because state government has not budgeted sufficient funds to guarantee that disabled people integrating into community life receive personalized care that addresses more than basic needs.

Court orders issued last year ensured the state continued funding service providers at 2015 levels. But federal monitor Ronnie Cohn said these funds were not enough to combat a staffing shortage.

The shortage left providers in 2016 up to 30 percent understaffed and created turnover rates as high as 70 percent which resulted in uprooted routines, overtime shifts for remaining staff and less resources devoted to activities that help disabled people engage with their community.

The report also referenced a Chicago Tribune investigation that found more than a thousand cases of abuse and neglect in state-funded group homes.

But Cohn told The Associated Press in an interview that ensuring quality care goes beyond more closely monitoring providers.

"Even the best providers with the best of intentions can't manufacture money to keep people working," Cohn said. "When the money stops moving, it creates problems."

Republican Gov. Bruce Rauner vetoed legislation last fall that would have raised caregiver pay to $15 an hour, saying that a funding increase must be tied to an agreement that will end Illinois' nearly two-year-long budget impasse. Rauner spokeswoman Catherine Kelly referred questions about the monitor's most recent report to the Department of Human Services.

Rep. Greg Harris of Chicago, a top budget negotiator for House Democrats, said he understands the risks posed by the shortage and said lawmakers are working to correct it this session by including more human services funding in the budget.

Difficulties attracting qualified caregivers also impede providers' abilities to open new group homes, the report concluded. That leaves many disabled Illinoisans on waitlists and in limbo, and forces some smaller group homes to merge and share staff.

A Illinois Group homes CEO tells judge he doesn't know location of 6 residents with developmental disabilities

Disability Services CEO Reuben Goodwin Sr.

Chicago, IL. - Dec 16, 2016 - In a stunning admission, the chief executive of a troubled network of group homes told a judge Friday that he didn't know the whereabouts of six of his residents with developmental disabilities.

It also wasn't clear that any of the six had their medications with them when they left homes run by Disability Services of Illinois, which lost its license because of safety concerns.

An incredulous Cook County Circuit Judge Kathleen Pantle responded by scolding the operator of Disability Services and sharply questioning his attorney.

"It's going to be 5 below zero on Sunday," Pantle said. "This is outrageous. You don't even know ... if they could be freezing to death or starving to death!"

For the full excellent Chicago Tribune article, by Patricia Callahan and Peter Matuszak: CLICK HERE

United Cerebral Palsy’s 2016 Report " Ranks States Services for People with Intellectual and Developmental Disabilities

United Cerebral Palsy’s  2016 report "The Case for Inclusion" ranks all 50 states and the District of Columbia (DC) on service outcomes for Americans with intellectual and developmental disabilities (ID/DD).

This year’s report shows that:

• All states have room for some improvement, but some have consistently remained at the bottom of the rankings since 2007;
• Waiting lists for residential and community services remain high, demonstrating the unmet need of people with disabilities and their families;
• 10 states, up from 8 last year, have at least one-third (33 percent) of individuals with ID/DD working in competitive employment — returning to the same level as in 2014;
• 15 states report successfully placing at least 60 percent of individuals in vocational rehabilitation in jobs. No states met the standard on all three success measures this year.

The report finds almost 350,000 people in th USA are on waiting lists for community-based services,  Also an increasing number of states (18) have very little or no wait.

Arizona has taken the number one spot for the fifth year on the list. Arkansas, Once again Illinois, Mississippi and Texas have consistently performed poorly in the ranking since 2007, with Montana rounded out the bottom five on the list this year.

FOR THE FULL REPORT: CLICK HERE
# # #

Illinois Caregivers crisis by the numbers

• 220,000: Estimated number of people with disabilities living in Illinois
• 32,732: Estimated number of Illinois residents with disabilities living with caregivers 60 or older
• 18,671: People with disabilities on the waiting list for state services
• $2,000: Maximum assets people with disabilities can have in order to receive government benefits
• 225: Parents reached by the Parent Support Program at DayOne PACT in Lisle since early 2015
• 47: Illinois' rank for how well Medicaid programs serve people with disabilities
• 21 years and 364 days: When Illinois students with disabilities are no longer eligible for public school services

Sources: 2015 State of the States in Intellectual and Developmental Disabilities report by the University of Colorado; Illinois Prioritization of Urgency of Need for Services list; Oak Wealth Advisors; DayOne PACT; 2015 Case for Inclusion report by United Cerebral Palsy

Illinois Council on Developmental Disabilities names new Director, Kimberly Mercer-Schleider

The Illinois Council on Developmental Disabilities (ICDD) is pleased to announce that Kimberly Mercer-Schleider (photo) has been selected as the new Director. Kimberly will assume her duties on Monday, September 12, 2016

With Kimberly’s knowledge, experience, energy and enthusiasm the Council will continue on its path of leading change in Illinois so that people with intellectual and developmental disabilities lead full lives in their communities. I hope you take the opportunity during the next few months to meet Kimberly and learn about her vision for the Council.

Illinois Council on Developmental Disabilities Chairperson Bill Bogdan shared this information.

Another Illinois Budget Casualty Of A Disability Social Service Agency, 'Centerstone' - SHAME ON ILLINOIS LEGISLATORS!

Centerstone describes itself as “one of the nation’s largest not-for-profit providers of community-based behavioral health care, offering a full range of mental health services, substance abuse treatment and intellectual and developmental disabilities services in Florida, Illinois, Indiana, Kentucky and Tennessee.”

From Centerstone CEO John Markley on June 21, 2016…
For the last 11 months, Centerstone has, in good faith, offered services we were contracted to provide by the state of Illinois, but because our state officials have not passed a budget, we have not been paid for these services. Today, our state owes Centerstone more than $6 million.

We, along with other organizations, have warned public officials for months that we could not sustain the losses the state of Illinois was imposing on us, but our concerns have been ignored.

With no end to this state contract crisis in sight, the viability of our entire organization is being threatened. So, after careful review of the situation, we are enacting difficult measures to protect Centerstone, our 600 employees across the state and the 16,000 people of all ages who depend on us.

In the coming fiscal year, we will eliminate several state contracts because of the risk involved. These contracts represent vital services in our communities, but we cannot sustain them in such uncertain times. This means, as of June 30, 2016, the following services will close:

• · Comprehensive Community Based Youth services (CCBYS) in Franklin, Jackson, Perry and Williamson Counties;
• · Crisis Stabilization services at the Centerstone Crisis Center in Williamson County, a service which has saved our state more than $4 million in healthcare costs;
• · DMH Juvenile Justice services in Franklin, Jackson, Jefferson and Williamson Counties;
• · Homeless Youth services in Franklin, Jackson, Perry and Williamson Counties;
• · Psychiatric Medication funds used in Calhoun, Franklin, Jackson, Jersey, Madison, and Williamson Counties;
• · Supported Residential services (one group home) in Alton; and
• · Teen Pregnancy Prevention services in Franklin County.

Additionally, Halfway House beds in Marion will be reduced.

A total of 700 clients and 39 staff members will be affected by these changes. The loss of our colleagues and services is painful, but our state has offered us little choice.

It is our sincere hope that our Governor and legislature finally do the right thing and act in the best interests of all of their constituents by ending this state budget crisis.

For Centerstone, visit: https://www.centerstone.org/

Justice Dept Reaches Extension Agreement to Improve Georgia’s Developmental Disability and Mental Health System

from a Press Release on May 18, 2016

Department of Justice

Office of Public Affairs

The Justice Department today announced that it has entered into an extension agreement with the state of Georgia to improve the quality and availability of services for people with developmental disabilities living in the community and to provide supported housing to individuals with significant mental illness who need it.

The extension agreement builds upon a 2010 settlement agreement resolving a lawsuit brought by the department under the Americans with Disabilities Act and the Supreme Court’s Olmstead decision.  The case involves Georgia’s provision of community services for individuals with mental illness and developmental disabilities.  The department found in 2009 that Georgia was forcing people with disabilities into state hospitals instead of providing community-based services, in violation of the ADA’s integration requirements.  In January, the department alleged that Georgia was not in compliance with the 2010 agreement, both regarding helping people move from institutions into their communities and regarding quality and oversight of community-based services.  In light of the agreement and the significant commitments Georgia has made in it, the department has agreed to withdraw its motion to enforce that earlier agreement.

The agreement will resolve the seven areas of alleged deficiency  identified by the department in its January court filing.  Under the agreement, Georgia will help people with developmental disabilities move from its state hospitals to integrated settings, consistent with their needs and preferences; will identify and address each individual’s needs in the community prior to discharge; and will monitor services and track outcomes for people after their discharge.  For individuals who have moved from the state hospitals to the community, Georgia will monitor their health and wellbeing to ensure that emerging needs are met in a timely fashion.  The extension agreement also calls for creation of at least 675 new Medicaid home- and community-based waiver slots as alternatives to placement in a facility.  Georgia will provide clinical oversight and enhanced support coordination for individuals with developmental disabilities served by the state.

The extension agreement enhances quality oversight, requiring specific actions in the event of serious incidents and corrective actions to address deficiencies.  The state will collect and review data to identify any trends and develop quality improvement initiatives.  In addition, Georgia will require providers to develop risk management and quality improvement programs.

Under the agreement, at least 600 additional individuals with mental illness will receive bridge funding and at least 633 will receive housing vouchers under the Georgia housing voucher program.  By June 30, 2018, the state is to have capacity to provide supported housing to any of the people with mental illness covered by the settlement agreement that need it.  The extension agreement requires a referral procedure to supported housing for people who need it leaving the state hospitals, jails, prisons, emergency rooms or homeless shelters.

“By strengthening the services provided by Georgia’s mental health system, this agreement will make a difference in the lives of Georgians with developmental disabilities or mental illness who wish to build lives in the community,” said Principal Deputy Assistant Attorney General Vanita Gupta, head of the Justice Department’s Civil Rights Division.  “We look forward to working with Georgia to deliver on the promise of community integration enshrined in the ADA.”

“During the past five years, the State of Georgia has significantly changed the way it provides services for people with disabilities,” said U.S Attorney John A. Horn of the Northern District of Georgia.  “Recognizing that we have more work to do in this area, I am encouraged by Georgia’s willingness to continue to partner with the Department of Justice and stakeholders to improve the quality of services for people with developmental disabilities and significant mental illness in our community.”

The Civil Rights Division enforces the ADA, which authorizes the Attorney General to investigate whether a state is serving individuals in the most integrated settings appropriate to their needs.  Please visit www.justice.gov/crt to learn more about the Olmstead decision, the ADA and other laws enforced by the Justice Department’s Civil Rights Division.

The agreement was secured due to the efforts of Civil Rights Division’s Special Litigation Section and the U.S. Attorney’s Office of the Northern District of Georgia.  

Georgia ADA Extension Agreement

https://www.justice.gov/opa/pr/justice-department-reaches-extension-agreement-improve-georgia-s-developmental-disability-and

National Developmental Disabilities Awareness Month is March: Do you understand developmental disabilities?

There is something very promising about March. We start to feel the early anticipation of spring while still constantly being reminded that it is winter. My friend and I started walking in the mornings again, for example, but we both know that any day a snowstorm could brew that would have us running back home for the safety of our treadmills. The uncertainty and hope that are both present in March are both good reasons that it was named National Developmental Disabilities Awareness month by President Ronald Reagan in 1987.

article by Monica Villar, Their Voice | Mar 3, 2016The Centers for Disease Control and Prevention (CDC) defines developmental disorders as "a group of conditions due to impairment in physical, learning, language or behavior." Although in many cases specific causes are still unknown, a number of developmental disorders are thought to be due to factors that include genetics, parental health and behaviors (smoking and drinking) during pregnancy, complications during birth, infections during pregnancy, early infections in the baby and exposure to high levels of environmental toxins such as lead to mother and/or child.

One criteria used when determining an individual's developmental disability comes from a section of the federal definition “… the disability results in substantial functional limitations in three or more of the following areas of major life activity: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living and economic self-sufficiency.”

Intellectual disabilities
With these factors in mind, let’s review the most common conditions that fall under the heading of “developmental disability” starting with “intellectual disability.” Though this condition was previously referred to as “mental retardation,” the more acceptable term is intellectual disability. This refers to limits in a person’s ability to learn at expected levels and function in daily life. Intellectual disabilities are typically diagnosed in categories including mild, moderate or severe. Those with intellectual disabilities learn more slowly, don’t always remember things they have learned, struggle applying what they have learned to new situations and usually think about life in a more concrete way. However, they will continue to learn and develop through their lives.

Autism
Autism spectrum disorder (ASD) is a group of developmental disabilities that can create social, communication and behavioral challenges. Although there is a lot of variance in individuals with autism, some commonalities are avoidance or indifference to others, difficulty relating to others, monotonous and repetitive behavior such as rocking back and forth. People with autism are usually sensitive to sensory stimulation and, therefore, can be overwhelmed by ordinary sights, smells, sounds and touches.

Cerebral palsy
Cerebral palsy refers to a group of disorders that affect the individual’s ability to move and maintain balance and poster and is the most common motor disability that occurs in childhood. Cerebral palsy is caused by abnormal brain development or damage occurring to the developing brain resulting in the inability to control muscle movement. Individuals with severe cerebral palsy may require assistance in walking or may not be able to walk at all. Those with mild cerebral palsy walk awkwardly but may not need any assistance. In addition to the mobility challenges, some individuals with cerebral palsy may also experience intellectual disability, seizures, or problems with speech, hearing or vision.

Down syndrome
Down syndrome, also known as Trisomy 21, results when extra genetic material causes delays in both mental and physical development. More specifically, during conception genetic information is inherited from both parents in the form of 46 chromosomes equally divided between the mother and father. With Down syndrome, the child gets an extra chromosome 21, which results in a total of 47 instead of 46. The physical features and medical conditions that come with Down syndrome vary between individuals and most health problems can be treated. This means that most people with Down syndrome can lead very healthy and productive lives. We have had the privilege of highlighting some of these individuals in previous articles.

Spina bifida
Spina bifida, which literally means “cleft spine,” is the incomplete development of the brain, spinal cord and/or the protective covering around them. The complications associated with spina bifida vary from minor physical problems with minimal impairment to severe physical and mental disabilities. The impact of the disability will be determined by the size and location of the malformation, if it is covered and what spinal nerves are involved.

ADHD
Although not everyone is in agreement, the CDC also lists ADHD (Attention-Deficit/Hyperactivity Disorder) as a developmental disability. Individuals with ADHD have trouble paying attention, and being overly or hyperactive. ADHD cannot be cured but can be managed and symptoms may improve as the child ages.

My experience in this field is that we can only truly grow as a strong community when we take the time to get to know each other. I hope that this will be our first step together to fulfill the spirit of this month “… to highlight the many ways in which people with and without developmental disabilities come together to form, strong diverse communities.”

For more information, visit www.arcjc.org.
Monica Villar works for RISE Services in Orem, a nonprofit specializing in supporting those with developmental disabilities.