Ed's Newsletter
MOVING PEOPLE OUT OF INSTITUTIONS . . .
OUTCRY OVER ABUSE AT CHOATE CENTER . . .
COVID-RELATED RATE INCREASES EXTENDED . . .
McMANUS CONSULTING
DISABILITY SERVICES
847.256.0456, [email protected], Facebook, LinkedIn
ED’s NEWSLETTER
No. 178 – March 29, 2021
WE NEED TO RESUME SHUTTING DOWN INSTITUTIONS . . .
If you have been reading this newsletter, you know that 9 workers at Choate Mental Health & Developmental Center in far downstate Anna have been indicted on 16 felony charges in the past year in connection with attacks on residents. This has got to stop!
We asked people to write to the governor to insist that he resume the closing of state institutions, and this letter was exceptional. It’s from a Champaign mom, Debra Ruesch, a member of the Champaign County DD Board, describing her son’s awful four-year stay at Shapiro Developmental Center in Kankakee:
Dear Gov. Pritzker:
I am writing on behalf of my 32-year old son, Daniel, as well as many other Illinois citizens with developmental disabilities who continue to face a housing crisis. Daniel has autism, is non-verbal and requires 24/7 supports. He is loving, funny and helpful, a terrific son who ‘keeps us on our toes’ and is an essential part of our family.
Dan is fortunate to live, for just over six years now, in a small group home near us in Champaign. I am writing to you because of the threat that Dan’s home could be forced to close because of inadequate funding. The impetus of my letter, however, is Ed McManus’ heartbreaking narrative March 15 about the criminally abusive treatment of residents at Choate SODC.
I say that Daniel is fortunate to live in a group home near us because far too many Illinois residents with developmental disabilities are forced, if they receive housing supports at all, to live far from their home communities. And too many of them, especially people with complex medical and/or behavioral needs, are living in institutions like Choate, where they are especially vulnerable to mistreatment and neglect. I can identify with the torment of those individuals, and that of their families.
Prior to moving to his current CILA, very challenging circumstances led to Daniel’s ‘temporary’ placement 90 miles away at Shapiro Center. His placement there was intended to be for six to eight weeks. He was stuck there for almost four years. It was as though he had been imprisoned. He lived on a ‘unit’ with 17 other guys. They had two bathrooms. The showers and toilets broke down regularly. It wasn’t uncommon for the bathrooms to have no hand soap or toweling. The ‘living room’ was lifeless, hospital-like, cold. The guys spent their evenings seated in a large rectangle around one TV. A lucky few had comfortable seating; most were seated on hard-backed institutional chairs. Almost all shared bedrooms and had no personal space whatsoever. I think the incarcerated are better fed.
Staff direction to residents was typically bossy and sharp. The atmosphere was one of ‘crowd control’. Choice was almost never an option. The need to manage the group always took precedence over the needs of the individual. Some of the staff wore scrubs, which really added to the institutional flavor of the place. There were too many hard edges, not enough warmth, comfort and caring. It was a joyless place.
I can’t claim to have witnessed physical abuse, but Dan was miserable. We visited two to three times a week and were able to take him out to eat, shop and visit parks, but we worried about his well-being every minute that we weren’t there and we advocated continually to find him a way out. Sadly, we observed that most of the guys on Dan’s unit rarely left the SODC.
We are very grateful to the agency that eventually committed to opening a home for Dan here in Champaign. Over the course of the six plus years that Dan has been ‘home’, his emotional and behavioral stability have improved dramatically. As an adult, we’ve never seen him happier. But, no exaggeration, the threat that the agency will not be able to ‘hang on’ is with us every day.
CILAs are underfunded and chronically understaffed. Direct Service Persons (DSPs), those who REALLY support my son, are systemically undervalued and undercompensated. Dan’s agency is a small presence in our community. Even before COVID blindsided us all, we were aware that the cost of operating their three Champaign homes was becoming too burdensome. They closed one home in January. They haven’t said so, but the possibility that they could close Dan’s home is scary.
The State spends more than $400 million a year to keep the SODCs operating. That money should be providing better quality community-based supports for individuals with disabilities. These people are not criminals. They are wonderful people like my son. They deserve the opportunity to live near their families, to build friendships and develop interests, to volunteer, work and play in their communities, just like ‘regular’ people do.
Ed McManus’ narrative regarding the terrible circumstances at Choate is disgraceful, disgusting and, I suspect, just one example of widespread systemic abuse. No system of care is perfect, but we can and absolutely must do better. Please, Governor, make humane treatment of our citizens with developmental disabilities a priority.
--Thank you, Debra Ruesch
WHAT YOU CAN DO . . .
The Governor has the sole authority to decide how many state institutions Illinois will have. We have 7 now, housing 1,649 persons. Only two other states have more. We need to resume shutting them down—giving their residents the opportunity to live in the community (and saving the State a lot of money).
Please write to the governor. Go here or send a letter to Office of the Governor, 207 State House, Springfield, IL 62706.
You may also want to contact DHS Secretary Grace Hou, DDD Director Allison Stark, and your state senator and state representative, urging them to urge the governor to act. (Only the governor can do it; the legislators can only “urge”.)
UPDATE: All but one of the 9 Choate defendants are awaiting trial. Cody Barger made a deal with prosecutors March 25. He agreed to plead guilty to lying to State Police—falsely denying that he was present when another worker “caused a resident to drink an entire cup of hot sauce”.
Barger avoided jail but was sentenced to two years probation; three other charges involving official misconduct and obstructing justice were dropped. He was sentenced to “second chance probation”, which provides that if he completes the probation, his case will be dismissed and he will have no conviction on his record.
NEWS ABOUT COVID . . .
The Division has announced that it is extending the temporary Covid-related increases in rates to provider agencies through June 30. This includes the 5% increase to CILA agencies and the 15% increase for CDS providers. In addition, CILA agencies will continue to be authorized to provide at-home day services to their residents as needed.
Lack of access to vaccination has been a big problem for people with disabilities, especially in Chicago and Cook County. The Division has been working with the IL Dept. of Public Health to try to resolve it. Gov. Pritzker has announced that all residents 16 and over will be eligible for vaccination April 12.
ASKING FOR A LOT MORE $$ . . .
The They Deserve More coalition will be formally announcing one of these days that we are asking for more funding—a lot more!--for disability services from the legislature.
The steering committee of the coalition has been meeting weekly to strategize. The committee consists of the CEOs of the six provider agencies that are spearheading the effort, as well as the heads of the six statewide provider organizations (including McManus Consulting).
We have been drafting bills, lining up sponsors and so forth, which takes time. We will be asking the legislature for an additional appropriation of $329 million, which is what DHS’s consultant, Guidehouse Inc., declared is needed in FY2022 to stabilize the I/DD service system. Gov. Pritzker has recommended $77 million.
LEGISLATIVE REPORT . . .
A few bills worth checking out . . .
HOUSE BILL 2784: Access Living is supporting this bill to ensure that non-police support can be called for people with disabilities who are in a mental or behavioral crisis. Approved by House Mental Health and Addictions Committee.
HB3786: Provides that when an initial investigation of an allegation of abuse or neglect of a resident of a MH or DD facility indicates, based upon credible evidence, that an employee is the perpetrator, the employee shall immediately be barred from any further contact with residents of the facility. Approved by House Human Services Committee.
HB3849: The Guardianship & Advocacy Commission is supporting a bill that provides persons with I/DD the option of designating someone to assist them with making decisions, including helping them access information to weigh decisions and helping them to communicate their decisions. This would be a less restrictive option than guardianship. Approved by House Judiciary/Civil Committee.
Go to https://www.ilga.gov/ for details on all bills.
IN OUR INBOX . . .
Huge reaction to report of 9 workers at Choate indicted in attacks on residents . . .
FROM BARBARA PRITCHARD, Urbana self-advocate: “I’m fighting to close these unsafe and unnecessary institutions in Illinois. I believe all people can live in the community with supports that are customized for them. Each person will live a happier life and the state will spend less money. 17 states have done just this very thing. Illinois is so far behind that it is maddening!”
FROM JILL GOLDSTEIN, Highland Park parent: “We must insist that Illinois end the costly, inhumane practice of residential facilities. These institutions historically lock away vulnerable people and put them at imminent risk. Tell our leaders that you favor financial support directly to disabled people or their guardians to enable them to live in the community.”
FROM SUSAN HUDKINS, Glencoe parent (on Facebook): “As I read this newsletter, I have such anger about this and all those involved.”
FROM RUTH STEARNS BECKES, Lawrence Crawford Assn. for Exceptional Citizens: “No excuse!! I am appalled to think this happened.”
FROM DEBBIE WEGER, Lawrence Crawford: “This is horrible. No excuse. Shame on you. So so sad.”
FROM CECILIA FELL SCHOTT, Highland Park: “Yikes! Horrifying to hear.”
FROM KELLY BALDRATE, Evanston: “Why isn’t the Tribune doing a 7-part series (or whatever it was last year on CILAs) about the conditions in state institutions??”
FROM KRISTI BENNETT, Lawrence Crawford: “Irate doesn’t describe it. Disgusted. Heartbroken. P-----. Hurt. Sad. Nope, can’t even find the right words for how wrong this is.”
FROM WENDY THOMPSON: “That's awful! No one deserves to be treated like that, especially someone who probably can't fight back.”
FROM STEPHENIE NORTH: “All I can say is they'd better feel glad my sister wasn't in their facility! This infuriates me!”
FROM JODY TUTTLE, Robinson “I hope they throw the book at these so-called workers.”
FROM SHARON HANSON: “Residents and patients have been abused and mistreated for a long time and complaints are swept under the rug.”
FROM BARBARA MARIOTTINI, Addison: “This makes me sick.”
FROM DIANE BREHM STONE, Naperville parent: “I have no comment that would contain appropriate language for this forum. May karma find these horrible individuals.”
FROM MICHELE WESTMAAS, Quincy parent: “16 felony charges against 9 workers at a state institution this past year! Why isn’t this in the news? The state has known about the abuse there for many years and done nothing! Where is the outrage?”
FROM LEANNE MULL, Blue Tower Solutions, Decatur: “Complete and total sadists are allowed access to victims by an antiquated system of isolation.”
FROM GILLIAN BROADDUS, Decatur: “If anyone isn't aware, Anna is a ‘sundown’ town (look it up on Google) with a massive history of racism. That there would also be this kind of ableist abuse doesn't surprise me.”
FROM PROGRESS CENTER FOR INDEPENDENT LIVING, Forest Park: “Progress Center is part of the Going Home Coalition, which for years has called on Illinois to close the remaining SODCs. The news of these indictments is just one reason why they need to close.”
FROM CAROL PARSONS, Sycamore: “Just awful to think there are these types of people doing this to vulnerable individuals. Glad they got caught and will get punished. Hope the victims are doing well after all they went through.”
FROM ARLENE BANDSTRA, parent: “Horrible. Tears for our kids and adults.”
FROM MARY ANN DYRDA, reacting to Cody Barger being sentenced to probation: “a pathetic ‘sentence’.”
FROM ERIN DROZD: “This is very sad news.”
FROM SHAWNA EGAN, Cary parent: “Why aren't we calling these out for what they really are? These are HATE CRIMES against people with disabilities! And there must be no deals. No credit for time served. When will the lives of people with disabilities be valued?!”
Another perspective . . .
FROM DE KING, a Choate employe: “Why not visit the individuals we serve and ask them how much they are abused? No place is perfect and yes, recently some allegations have been made and are being addressed. The good and caring staff outweigh the bad ones. In every walk of life where people are served, there are people who do wrong. I’ve heard where individuals living in CILA homes have been abused, sprayed with hoses, beat in backyards, etc. It doesn’t mean all staff are like that in community homes, does it?
“I don’t know what your agenda is but before you slander Choate, you need to look a little closer. I’ve worked for Choate over 20 years and we care very much for the individuals we serve. We are advocates for them and we watch over them, and if anyone does them wrong we report it. Our agenda is to get individuals out into the community, we encourage it, and many leave, and many come back.
“You say that all should live in the community, yet at the same time, the community is harsh to them, unaccepting, and return them to the facility. Many states have closed facilities, and the individuals end up in jail, homeless, assaulted or dead. Again I testify that we care about the individuals we serve. You owe us an apology.”
(Thank you for this message, Ms. King. I certainly agree that the entire Choate staff should not be judged by the actions of the 9 indicted workers.)
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On the report that Illinois is the only state in the country where a provider-initiated discharge of a CILA resident is a Medicaid-appealable action . . .
FROM TONY STAHL, Sycamore parent: “ ‘No other state does it this way.’ Isn’t this Illinois in a nutshell?!”
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On DHS discontinuing the Quality Scorecard reports of abuse and neglect in CILAs and SODCs . . .
FROM GENE BENSINGER, Chicago parent/advocate: “Thank you for highlighting the State’s pause and redesign plans for CILA/SODC quality scorecards. I remain an enthusiastic supporter of the scorecard concept. Disabled consumers, their families, researchers, elected officials, policymakers and the public, including journalists, all need a regularly updated, overall agency- and site-level snapshot describing the quality of services offered across Illinois.
“There is no question, Ed, that you are, and have always been, a fierce champion for our community. I defer to your expertise on the issues and potential ramifications of the specific OIG content shared on the original scorecard. I wasn’t happy with the design, either. You wrote that the scorecard had ‘a lot of valuable information about each agency and even each site’. I agree, but think it shared too much confusing and technical data, making it impossible for consumers to understand, let alone analyze or use effectively.
“In 2018, I suggested that the State follow proven scorecard models like the rating system used by the Care Quality Commission, the United Kingdom’s national system regulator. I still think it’s the best approach. Their investigators collect and analyze ongoing required regulatory reports and then pose 5 key questions for each site. Based on the answers they receive for each question, they assign and publish a rating of: excellent, good, needing improvement or inadequate. The 5 questions posed are straightforward: Is the site safe? Effective? Caring? Responsive to need? Well led (managed)? You can find further detail here.
“While not without some problems, this approach offers consumers an ability to reasonably compare providers. It also stimulates questions from current and prospective clients like, ‘Why is this site viewed as “needing improvement” in a particular category?’
“I hope you change your mind and support reviving a better version of the scorecard. In my view, transparency isn’t a buzzword. Individual privacy-protected transparency, including in the form of an agency and site scorecard, is an essential component of an effective oversight system.”
FROM ELLEN GARBER BRONFELD, co-director of IPADDU: “Ed has some valuable suggestions: Put more money into OIG, especially for training; allow appeals; and change the administrative code to require clear and convincing evidence, not just ‘more likely true than not’, which is outrageous.”
FROM BRUCE SEITZER, former senior vice president, Community Counseling Centers of Chicago (on LinkedIn): “I fully understand and appreciate the limitations of the Quality Scorecard, for both CILAs and SODCs, including the controversy over the definition of ‘founded’ allegations and the need for due process. However, in the absence of a better system, DHS and OIG do a disservice to those least able to speak for themselves by effectively discontinuing these reports. Improvement is admittedly needed, but to throw the baby out with the bath water, instead of building upon what is already in place, increases risk and reduces accountability. Residents in the community and those still stuck in an antiquated State institutional system deserve better.”
COMMENTS . . .
Send me your opinions, tips, suggestions, criticisms, or responses to articles. I like feedback.
PEOPLE . . .
MEG COOCH, executive director of the Arc of Illinois for the past four years, has been hired by the State and will become DDD Deputy Director of the Ligas Consent Decree on April 5. Director Stark said Meg will be leading the division’s work to meet requirements of the decree. Prior to the position with the Arc, Stark said, “Meg spent 20 years in local, state and national nonprofits focused on policy, advocacy and community organizing with people with disabilities of all ages, families and community organizations. Meg worked on federal health and disability policy in Washington and long-term services advocacy in San Francisco.”
Meg has done a great job at the Arc. I am looking forward to working with her in her new position. The Arc is conducting a search for a new ED.
JULIE SATHER has been promoted to Executive Director at Bethshan Association in Palos Heights. (I’m very late in reporting it. It happened in July. Sorry, Julie!) Julie previously was Director of Services and Supports there for 6 years, and before that, program manager at Elim Christian Services for 11 years.
KATIE SCHMID has been hired by NorthShore University HealthSystem as the director of Medical Group Operations in the Department of Surgery. She was Clinical and Behavior Services Division Manager at Search Inc. from 2005 to 2017.
JAYMA BERNHARD-PAGE, former Chief of the Bureau of Quality Management, has temporarily returned to the Division from retirement. Jayma will serve as the coordinator of the provider response required to determine compliance with the federal Settings Rule.
COMING UP . . .
APRIL 12: Ligas Town Hall Meeting, 10 a.m., on Zoom, hosted by The Arc. This is an opportunity to hear from DDD, the Court Monitor, the Family Advocate Program and the Family/Class Member Advisory Committee about the latest updates and future work of implementing the consent decree, and to ask questions. https://www.thearcofil.org/
APRIL 21-22: Annual Arc Convention, on Zoom.
APRIL 27: Annual Going Home Advocacy Day. 10 a.m., on Zoom, hosted by the Arc. The Going Home Coalition says: “We house over 1,600 people with I/DD in state institutions in Illinois. That simply must end. No matter the challenges a person may face in life, everyone deserves a place to call home.” www.goinghomeillinois.org.
DDD COMMUNITY PROVIDER TRAININGS:
APRIL 8: “Behavioral Supports”, Jen Gentile, Deputy Director, Clinical Services, and Dennis Beedle, Medical Director.
APRIL 22: “Dietary and Safe Dining Practices”, Anne Fitz, Statewide Nursing Coordinator, and Patrick Coneff, Speech Language Pathologist
MAY 13: “Abuse & Neglect”, Peter Neumer, Charles Wright and Bill Diggins, OIG, and Meg Cooch, Deputy Director, Ligas
MAY 27 (rescheduled from March 25): “Individual Rights, Independence & Social Relationships”, The Self-Advocacy Alliance
All webinars are from 1-3 p.m. Registration.
OTHER STUFF . . .
HOW TO FIND THE RIGHT FIT: My friend Ellen Garber Bronfeld was the featured speaker at the March “Friday Forum”, a program put on by Connect to Community. CTC is a terrific organization based in Palatine and “dedicated to finding and facilitating purposeful employment and enjoyment for adults with DD.” Ellen, who is the co-founder and co-moderator of the IPADD Facebook group, shared her family’s journey to find the right residential fit for their son, Noah. The video is here.
THE CONSULTING PRACTICE . . .
WELCOME! LARC, located in south suburban Lansing, is the newest affiliate of McManus Consulting—our 54th organization. LARC, which has been in operation since 1956, provides CILA services to 44 individuals in 11 four-person homes, and it provides day training, work activities and Home-Based services to more than 50 additional persons. Ernie Gonzalez is the executive director. https://www.larclansing.com/
RESCUE AND RECOVERY: I was invited to speak March 24 to a meeting of the Institutional Rescue and Recovery Coalition, a collective of organizations that has been advocating on behalf of residents of Illinois institutions impacted by the coronavirus. They were very interested in learning more about abuse occurring in SODCs and the efforts to shut them down.
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McManus Consulting was founded in 2011 by Ed McManus, who worked for DHS for 18 years--as an attorney in the Office of Inspector General, state coordinator of the Home-Based Program and facilitator of the DDD North Suburban Network--and before that as a reporter and editor for the Chicago Tribune in Springfield and Chicago. We have provided services to more than 75 agencies, including staff training on how the system works and phone consultation on a retainer basis when issues arise. We also can arrange for consultations with families or provide pro bono assistance to them over the phone.
Ed's Newsletter is published approximately once a month, made possible by the support of the following affiliates who are on retainer: Access Living, Active Visions, A New Age Human Services, A+ Autism Solutions, Arts of Life, Aspire, At Home Mission, Avenues to Independence, Bethesda Lutheran Communities, CCAR Industries, Center for Enriched Living, Center for Independent Futures, Champaign County DD Board, Clearbrook, Community Link, Douglas Center, Encompass/Jewish United Fund, Friendship House, Garden Center, Gateway Services, Gateway to Learning, Glenkirk, Good Shepherd Manor, Helping Hand, Individual Advocacy Group, KCCDD/Knox County, Lambs Farm, LARC/Lansing, Leeda, Little City, McHenry County MH Board, Malcolm Eaton Enterprises, Misericordia, Mulford Homes/Diane Home Care, Orchard Village, Pioneer Center, Progressive Careers & Housing, Rimland, Riverside, Royal Living Center, St. Coletta WI, Sheltered Village, Trinity, UCP Seguin, Warren Achievement, The Workshop/Galena. ISCs: Central IL Service Access, Community Alternatives Unlimited. Disability-related law firms: Cahill & Associates, Chamberlin Law Group, Matt Cohen & Associates, Monahan Law Group, Rubin Law, Whitted Takiff.