Ed's Newsletter
HOW IS DDD DOING? . . .
HOSPITAL VISITATION POLICY: IT’S NOT WORKING . . .
VOTE YES ON FAIR TAX . . .
McMANUS CONSULTING
DISABILITY SERVICES
847.256.0456, [email protected], Facebook, LinkedIn
ED’s NEWSLETTER
No. 161 – Oct. 9, 2020
DDD STILL TRYING TO COPE . . .
The Division of DD continues to be in the grips of the coronavirus, just like the rest of the Dept. of Human Services and the State of Illinois and the rest of the nation.
Most of the impact has been on people attending Community Day Services (formerly known as Developmental Training). CDS was shut down from March until late summer.
--People in the Home-Based Services program still could obtain $2,349 per month in services, they just couldn’t go to their day program, so most of them simply increased the amount they were spending to hire personal support workers.
--CILA agencies were funded to provide day activities to their residents.
--Residents of ICFDDs and SODCs also received day services at their facilities.
CDS providers received monthly “retention” payments until Sept. 1. At that point, they could re-open their doors and resume billing for the services they provided. But many, many of their participants didn’t return. The families of many Home-Based participants are concerned about exposing their sons and daughters to the virus. And many CILA residents are continuing to receive their day services in the CILAs.
A survey by McManus Consulting of 37 CDS providers across the state found that only 23.5% of their participants returned in September.
Meanwhile, the Division announced some big news Oct. 1: Creation of a Virtual Day Services program. All people in the CILA and Home-Based programs are now able to obtain VDS. See https://www.dhs.state.il.us/page.aspx?item=126491
A FAMILY’S SAD STORY . . .
The IL Dept. of Public Health issued a directive in May calling for hospital patients with I/DD to be allowed to have a family member or support person at their bedside. https://www.dhs.state.il.us/page.aspx?item=125019
In mid-July, we learned that an acute-care hospital in the western suburbs was flatly refusing to follow the department’s directive--prohibiting a seriously-ill woman from being visited by her parents for any more than two hours per day.
This went on for three long weeks. The parents finally were allowed visits of five hours per day starting Aug. 5. Their daughter died Sept. 26.
What a sad, sad story! Our hearts go out to the family. Can you imagine what that would be like if it happened to your family?
The patient’s name was Ellyn Lubbers. (We didn’t use her name when we reported on this in August.) Ellyn was 56 and had lived in a CILA operated by Bethshan in Palos Heights for many years. She had autism and tuberous sclerosis complex, a rare genetic condition.
She was infected with coronavirus in April and hospitalized for a week. Then, in June, she began to have status seizures, and she was admitted to Northwestern Memorial Hospital. She was intubated and placed on a ventilator, and she later had a tracheotomy. Fortunately, there were no restrictions on her parents being there.
She was transferred to the acute-care hospital July 16 for the purpose of weaning her off the ventilator. That’s when the visitor restrictions began, even though Ellyn could not speak and make her needs known. Her mother said when she came to the hospital two days later, “her bed was soaked with urine—and no nurse in sight!” The following week, the mom was unable to go to the hospital for two days; she said Ellyn had a pressure wound on her foot, “and when I got there I found the dressing had not been changed in three days.”
Ellyn finally was able to go off the ventilator Aug. 11, but her seizures resumed Sept. 4, and her condition deteriorated from there.
‘SHOULD’ NEEDS TO BE ‘MUST’ . . .
As pleased as we were with DPH’s directive in May, it clearly did not go far enough. It was not mandatory, and there was no mechanism to enforce it. So the facility treating Ellyn Lubbers was able to violate her rights and her family’s rights with abandon. We only know about that because her family contacted us for help. It’s easy to imagine that there may be many Ellyns out there lying alone in hospital beds.
Unfortunately, the DPH statement simply said that the department was clarifying that facilities “should” allow patients with I/DD to be accompanied by a support person. That “should” needs to be “must”. We have urged Gov. Pritzker and the director of DPH, Dr. Ngozi Ezike, to amend the statement to “require” hospitals to permit support persons, but they have taken no further action.
At least two other states that have done just that—New Jersey and Maryland.
The directive issued by the State of New Jersey states, in part:
“The Department of Health considers a designated support person essential to patient care for patients with disabilities where the disability may be due to altered mental status, intellectual or cognitive disability, communication barriers or behavioral concerns. Therefore, hospitals are required to allow a designated support person to be with the disabled patient during hospitalization.”
The directive issued by the State of Maryland states, in part:
“. . . All licensed Maryland hospitals shall adopt visitation policies on or before May 22, 2020, that . . . recognize the needs of individuals with disabilities, (including) provisions authorizing support persons to accompany to, visit and stay in the hospital with individuals with disabilities.”
In June, the federal government forced the State of Connecticut to do the same.
The U.S. Office for Civil Rights, an agency of the Dept. of Health and Human Services, had received a complaint from several disability organizations that Connecticut’s policies were violating the Americans with Disabilities Act, the Rehabilitation Act and the Affordable Care Act. The complainants alleged that patients were being denied “equal access to medical treatment, effective communication, and the ability to make informed decisions and provide consent, and that they were being unnecessarily subjected to physical and pharmacological restraints.”
Faced with a lawsuit, Connecticut issued an executive order requiring support persons.
The need for a strong statement in Illinois is very real. While we fully realize that hospitals must be very careful to prevent the spread of the virus, we believe the presence of a knowledgeable DSP or family member who can provide vital information may literally save a person’s life.
The American Academy of Developmental Medicine & Dentistry has drafted a petition advocating for patients with disabilities that has been signed by 47,000 persons and endorsed by many national organizations, and in Illinois by The Arc, IL Parents of Adults with DD Unite (IPADDU), Don Moss & Associates, Access Living and McManus Consulting. In addition, more than a dozen of our affiliate organizations have signed the petition (see list on academy website).
VOTE YES ON FAIR TAX AMENDMENT . . .
McManus Consulting is strongly supporting Gov. Pritzker’s state constitutional amendment to change the State’s income tax system from a flat tax to a graduated tax, where those with higher incomes pay more than those with lower incomes. It’s on the Nov. 3 ballot, and it requires 60% support among those voting on it.
Only nine states have a flat tax. Passing the amendment would guarantee a tax cut for 97% of the state’s taxpayers, and it would pump billions of urgently-needed dollars into the State’s coffers, including of course our woefully-underfunded disability system.
IARF and The Arc also have endorsed the amendment. IARF’s Josh Evans said it “will provide the resources that are necessary to address rate inadequacies, ensure a living wage for frontline staff, expand the community-based service array and reduce the number of individuals on the waiting list.”
Opponents have claimed that the amendment could result in a tax on retirement benefits, but AARP and other senior groups say that claim is completely false.
RACIAL HEALING . . .
DHS has created a racial healing initiative, “Healing Illinois”, which will distribute grants to organizations across the state to encourage the work of racial healing.
The project, in partnership with The Chicago Community Trust, will involve $4.5 million in grants to fund programs in four areas:
--Promoting Dialogue: conversations to build understanding and empathy
--Encouraging Collaboration: activities that bring people together in-person or virtually to connect and act together on a project or idea
--Facilitating Learning: activities designed to build or enhance knowledge
--Seeding Connection: racial healing circles, peace circles or restorative justice activities
The department describes it as “a step toward the larger mission of fighting poverty and ending racial inequality for all Illinoisans.” Any non-profit can apply to participate. https://www.dhs.state.il.us/page.aspx?item=126286
A NON-POLICE RESPONSE. . .
Our affiliate, Access Living, is urging state legislators to support the Community Emergency Services and Supports Act, which would help create non-police emergency response services for people with disabilities experiencing a mental or behavioral health crisis.
“While some community advocates have called for increased police training, a less broadly discussed opportunity is to improve 911 emergency response options,” Access Living says. “Far too often, 911 may dispatch police officers to situations where a person with a disability may only need help de-escalating from a mental health or behavioral health crisis. Many times, the person with a disability will not pose a threat if they have access to early intervention. Police involvement, especially untrained police involvement, can risk escalating the situation where a person fears or may not understand the police (or vice versa).”
A national study found that people with untreated mental health conditions are 16 times more likely than others to be killed when they come into contact with law enforcement.
Two bills have been introduced--Senate Bill 3449 and House Bill 5009. They would create a response service for mental and behavioral health emergencies wherever an ambulance service exists, and they require responders, such as paramedics and social workers, to use de-escalation techniques and then connect callers to existing care providers or to community services.
IN OUR INBOX . . .
FROM A CHICAGO PARENT: “Thank you for conducting the survey of CDS providers to see how many came back in September. Only 23.5%!! Very valuable information. Many people are concerned about the future of CDS. The Dept. on Aging is continuing to pay their providers. DDD needs to somehow find the money to do that, too.”
FROM HEIDI ZIMMERMAN (on our Facebook page), commenting on dismissal of suit challenging ISC restructuring, despite incredible audit findings: “Let’s hope DHS has learned a valuable lesson about honesty and transparency and will conduct the next NOFO bidding process fairly. Such an enormous shame that ISC agencies were treated this way!”
FROM ALAN COOPER: “Awful ruling.”
COMMENTS . . .
Send me your opinions, tips, suggestions, criticisms, or responses to articles. I like feedback.
PEOPLE . . .
CINDY SULLIVAN is retiring in November as executive director at Options & Advocacy for McHenry County, where she has worked for 21 years. Winter Noe, program manager for their Autism Resource Center, will replace her. Options & Advocacy was an ISC for 25 years, but did not seek contract renewal last year when the restructuring occurred. They still operate the Child & Family Connections program, Community Access Coordination for individuals over three who have I/DD, and the Autism Resource Center.
JASON CLARK, formerly chief program officer at Little City, is the new CEO at Avenues to Independence, replacing the venerable Bob Okazaki, retiring after 43 years. Jason has been in management jobs at Pioneer, Sertoma and Little City over the past 22 years.
ABBIE WEISBERG, longtime executive director of Keshet until last spring, and SHALOM KLEIN of Skokie have created “I Belong”, a new non-profit on the North Shore to employ people with I/DD and embrace Jewish values. Their website is https://ibelong.vip/.
DEBBIE HARRIS, former director of adult programs at Keshet, has been hired as the Chicago regional director of Yachad, which provides day services, job coaching and social activities to people with I/DD. Yachad is a branch of the National Jewish Council for Disabilities. The Chicago unit is affiliated with Encompass and the Jewish United Fund. https://www.yachad.org/
PATTI BOHEME, Executive Vice-President of Little Friends and head of their Center for Autism for 38 years, has moved to Wellspring Clinical Associates in Lisle, where she is Clinical Director of Autism Services.
ANN SICKON has announced that she will be resigning as exec director of the Center for Independent Futures as of next June. She has held the position for eight years. The Board is beginning a search for her replacement.
PAULA PHILLIPS, assistant exec director at Sertoma Centre, has retired after 30 years at the agency. She has been replaced by SARAH WIEMEYER, formerly director of community mental health and counseling. Sarah previously was director of clinical services at Helping Hand Center.
TIFFANY BAILEY has been appointed Deputy Director, SODC Operations, in the Division of DD. She has served as Acting Deputy Director since 2017. She began her career at a community-based organization as a QIDP and then, for the past 25 years, she was in SODC operations. She will continue to provide oversight and direction for short-term stabilization homes and support services teams.
DR. DENNIS BEEDLE has been hired as DDD’s new Medical Director. He is a former Associate Professor of Clinical Psychiatry at the University of Illinois at Chicago Medical College and previously served as the Clinical Director for the Division of Mental Health. Dr. Beedle’s main responsibilities will involve community focused medical and psychiatric policy oversight, case consultation and clinical eligibility determinations.
COMING UP . . .
OCT. 22: Webinar featuring Director Allison Stark providing an overview of the work and future goals for the Division in expanding supported employment opportunities. Followed by a panel of providers: Emily Raming, Total Link 2 Community; Jennifer Kowalkowski, Cornerstone Services; and Roger Cave, Parents Alliance Employment Project. 2-3 p.m. Register here.
OCT. 29: Webinar featuring DDD Deputy Director for Supported Employment, Casey Burke, who will identify the process for braiding vocational rehabilitation services provided by the Division of Rehabilitation Services with long term employment supports and services funded by DDD. 2-3 p.m. Register here.
Questions about DDD webinars: [email protected].
NOV. 16-20: Speak Up Speak Out Virtual Summit. https://www.speakupspeakoutsummit.org/
OTHER STUFF . . .
VACCINE: There is considerable evidence that people with I/DD are especially vulnerable to the coronavirus, which leads us to advocate for them to be given a priority when a vaccine is developed. We have sent a letter to the Dept. of Public Health, DHS and DDD to urge them to make sure that the individuals we serve and their caregivers receive priority in the early administration of the vaccine.
DRS: A Memorandum of Understanding has been completed between DDD and the Division of Rehabilitation Services (DRS) which addresses the synchronization of employment services to individuals with I/DD. The MOU outlines the collaborative relationship between DDD & DRS, as well as the various ISC agencies. It specifically addresses eligibility requirements, provider entity responsibilities, the scope of employment related services and supports, confidentiality measures, the flow of funding and perhaps, most importantly, the coordination and communication of all parties involved in the delivery of services.
ILLINOIS MISSES OUT: Federal Medicaid has announced the availability of $165 million in funding to states currently operating Money Follows the Person programs, which will help them transition individuals with disabilities and older adults from institutions and nursing facilities to home and community-based settings. Thirty-three states that operate the programs are eligible to receive up to $5 million each. Unfortunately, Illinois is not one of the 33 states. The Illinois MFP was phased out during the Rauner administration.
THE CONSULTING PRACTICE . . .
A NEW HOUSING INITIATIVE: I have been invited to join the board of directors of a new organization, the Collaborative Community Housing Initiative. CCHI envisions communities where individuals of all abilities live collectively. Their website, https://thecchi.org/, says they are “a grassroots collective made up of families with young adults with I/DD and community members who desire a new kind of community--one that is inclusive and diverse. It is not just housing, it represents inclusive opportunities in living, working, and socializing. Their first building will be in north suburban Highwood, and they hope to offer One, Two and Three Bedroom Apartments and Townhomes.
BED HOLD: I have been receiving calls from both providers and families asking for advice about returning to CILAs. Many families took their sons and daughters home in March. DHS continued to pay what is known as Bed Hold to the providers for three months, but no longer. At that point, some individuals returned, but other families were reluctant. However, that meant the providers were getting no funding for an empty bed, and technically they would have the right to discharge the person and begin serving a new person. One alternative that some agencies have used is asking the family to donate to them to make up for their financial loss.
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McManus Consulting was founded in 2011 by Ed McManus, who worked for the Dept. of Human Services 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, 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, 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. Independent Service Coordination agencies: 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.