Ed's Newsletter
CDS REOPENING SEPT. 1 . . .
THE RIGHT TO A SUPPORT PERSON IN THE HOSPITAL . . .
MORE CORONAVIRUS AT SHAPIRO . . .
ED’s NEWSLETTER
No. 158 – Aug. 10, 2020
McMANUS CONSULTING
DISABILITY SERVICES
847.256.0456, [email protected], Facebook, LinkedIn
5?-MONTH SHUTDOWN OF DAY PROGRAMS IS ENDING . . .
Community Day Services programs, shut down statewide since March, are due to reopen Sept. 1, although many participants may choose not to return right away.
Some agencies providing CDS (it used to be called Developmental Training) were allowed to go through a “soft reopening” process Aug. 1. They were required to demonstrate their preparedness to the Division of DD; complete a “risk/benefit assessment” of each participant; and provide an operational plan for meeting Division guidelines. They were allowed to reopen with a maximum of 25 individuals or 25% of room capacity, whichever was smaller.
When the rest of the programs open Sept. 1, maximum occupancy will be 50 individuals or 50% of room capacity. In the meantime, the Division is continuing to pay CDS providers fully through the month of August even though they are closed.
CILA agencies have been receiving payment for providing a program of activities to individuals in each home. If some people want to postpone going to CDS, they will be allowed to stay home. Individuals in the Home-Based program have been using their funds as they choose; many of them are likely to come back to CDS, but a significant number may postpone it.
ICFDDs are being reimbursed for the cost of caring for their individuals at home, but that will end Sept. 1. Some CDS agencies may arrange to send their staff into ICFDDs to provide day services there.
A SUPPORT PERSON IN THE HOSPITAL: ONE FAMILY’S EXPERIENCE . . .
The IL Dept. of Public Health adopted a policy in May stating that individuals with I/DD or cognitive impairments who are hospitalized should be allowed “to be accompanied by a support person determined to be essential to their care.” https://www.dhs.state.il.us/page.aspx?item=125019
Following is one family’s experience. (They gave us permission to report on this. We are not using the patient’s real name.)
“Carol” is 56, lives in a south suburban CILA and has tuberous sclerosis complex, a rare genetic disease that causes tumors (non-cancerous) to grow in the brain and other organs.
4/6: Carol was diagnosed with the coronavirus and was admitted to a community hospital where she was kept in isolation. Her parents and caregivers were not allowed to visit and make her needs known. Her parents said she was anxious and confused. She returned to the CILA after a week to recover.
6/1: She began to have status seizures, and she was admitted to Northwestern Memorial Hospital. She tested negative for the coronavirus at that point. She was intubated and placed on a ventilator. She later had a tracheotomy. There were no restrictions on her parents being there to support her.
7/16: She was transferred to a special facility, described as a “long-term acute care hospital”. Her family was initially told they could designate one person as a visitor, but for only 2 hours a day.
7/18: Carol’s mother contacted McManus Consulting. “Today I was informed that beginning on Monday (July 20) visitors will no longer be allowed at all,” she told us. “Is there a way for us to appeal this?”
7/19: “The goal is to wean her off the ventilator. It is such a long process. When I arrived yesterday, her bed was soaked with urine—and no nurse in sight. I have been visiting daily because Carol cannot speak for herself and cannot make her needs known. She has autism and becomes anxious in new situations and with people she doesn’t know. We need to know how to deal with this situation. We have been so stressed by this.”
7/20: When the hospital was presented with the IDPH statement, they agreed to continue 2-hour visits but no more. “And Carol’s dad is not allowed to visit—only me.”
7/21: DHS contacted hospital and they agreed to allow dad to visit on some days instead of mom.
7/22-23: Mom was unable to go to hospital.
7/23: We asked the legal staff at Access Living to contact the hospital.
7/24: “Carol has a pressure wound on her foot, and when I got there today I found the dressing has not been changed in three days! If a parent or caretaker isn’t there to advocate for our disabled family member, their needs may not be met.”
7/26: “Parents with disabled children and adults need more than 2 hours!”
7/29: No word on extending hours. “However, I have sometimes stayed longer without anyone saying anything.”
8/2: “No news on visitation. The receptionist gave me my name tag with the 2-hour time limit.”
AND FINALLY:
8/5: “I received a call from the hospital administration. They agreed to extend the time per day that we can be available to our daughter! We agreed to the time between 10:30 a.m. and 3:30 p.m.”
8/6: “I just want to say thanks to everyone who helped us!”
44 MORE INFECTIONS AT SHAPIRO CENTER. . .
The coronavirus outbreak at Ludeman Developmental Center in Park Forest has slowed down significantly in the past month, but the opposite has happened at Shapiro Center in Kankakee. 44 more residents have been infected at Shapiro since July 8, bringing the total of residents testing positive since the spring to 120. And 29 more Shapiro staff have been infected, bringing that total to 102.
Mabley Center in Dixon has reported 13 more resident cases and 13 more staff cases. The resident infection total at Mabley now stands at 60, which is more than half of the center’s population. Ludeman reported 7 more infected residents, bringing their total to 230—68% of their population. There have been no recent fatalities there, but since the spring they have reported the deaths of 7 residents and 4 staff.
‘BASELESS, RIDICULOUS AND INSULTING’ . . .
Lawyers for a Peoria man sued the State in June, contending that it was discriminatory for DDD to bar people with disabilities from attending the Community Day Services program even though many people without disabilities have been able to go back to work under Gov. Pritzker’s Phase IV restart plan. After a couple of court hearings, the division agreed to allow the Community Workshop & Training Center to provide services to the man, John McDonald.
But the Troutman Sanders firm of Chicago was not satisfied. They wanted the entire statewide program reopened, even though they had neglected to file a class action suit. U.S. Dist. Judge Rebecca Pallmeyer slammed the door shut on them July 17, stating that McDonald had no standing to challenge the division’s terms for reopening.
“The court sees little in the record that suggests Defendants are unwilling to take steps to permit CDS participants to return to their positions as quickly and safely as possible,” Pallmeyer said.
The State had responded angrily to the suit. “Notwithstanding Plaintiff’s baseless, ridiculous and insulting allegations of bigotry and cruelty, the Division and its staff are dedicated to serving the interests and meeting the needs of individuals with intellectual and developmental disabilities,” the State’s lawyers said. “Through this lawsuit, Plaintiff asks that the Court force IDHS, a State agency, to fund and administer one of its own programs according to the wishes of one individual, while ignoring the counsel of the public health experts who continue to urge caution.”
WORK ON RATE METHODOLOGY CONTINUES . . .
The consultants working on a new rate methodology for CILAs, ICFDDs and the CDS program have been given extra time, until Nov. 30, to finish their work. Navigant Consulting was hired by the Ligas Rates Oversight Committee to undertake the project. In the meantime, Navigant has been acquired by Guidehouse, a portfolio company of Veritas Capital. The consulting contract was to expire Aug. 31, but the parties to the Ligas Consent Decree said more time was needed “due to Covid-related delays.”
SETTINGS RULE DEADLINE EXTENDED . . .
The U.S. Department of Health and Human Services has delayed the implementation of the Home and Community-Based Waiver Settings Rule by one year, to March of 2023. Initially, states were given until 2019 to comply with the new rule. When the Trump administration took over in 2017, they delayed the deadline to 2022. Now they have delayed it until 2023, citing the difficulties states are encountering as a result of the COVID-19 crisis. The rule will require that any setting that provides Medicaid services demonstrate the characteristics of a community-based, rather than institutional, setting.
IN OUR INBOX . . .
FROM AUDREY FINKEL, a Lisle parent (on Facebook): “Illinois has more intellectually/developmentally disabled adults in institutions than any other state except Texas. And now these citizens and their caregivers are getting sick and dying from COVID-19. Yet another reason why Illinois must get on board with what the other 48 states do, and create more independent living options for I/DD adults. They have a right to life, liberty and the pursuit of happiness as much as anyone else.”
FROM HARRIET LEVY, CEO of Center for Enriched Living, on the retirement of Bob Okazaki: “Those are BIG shoes to fill. Bob is so admired as a leader in the field and I don’t know that there is anyone more dedicated to the quality of life and health and well-being of people with developmental disabilities. He is a kind, compassionate and wonderful human being. Avenues to Independence has been so fortunate to have Bob at the helm these 43 years!”
COMMENTS . . .
Send me your opinions, tips, suggestions, criticisms, or responses to articles. I like feedback.
PEOPLE . . .
CASEY BURKE, director of employment at Little City, has joined DDD in a part-time contractual role, focused on expanding and promoting employment initiatives. Casey has been at Little City for five years. Before that he was director of employment and day services at UCP Seguin.
ROBIN COOPER, director of technical assistance for the National Association of State Directors of Developmental Disability Services, has retired and has set up a consulting practice in her hometown of Madison, WI. She was with the association for 26 years.
JOHN HUELSKAMP has stepped aside as executive director at Beverly Farm in Godfrey to go back to his previous job as ED at Community Link in Breese. John was at Community Link for seven years before moving to Beverly Farm in January 2019. SANDY FERRIS, who has been on the staff at Beverly Farm for 15 years, has taken over as interim ED.
COMING UP . . .
AUG. 11: The Arc Lunchtime Webinar, “Collaboration Between Disability Advocates and Police in Western Suburbs”. At noon. Speakers from Aurora and Naperville police departments. https://www.thearcofil.org/
AUG. 11: COVID-19 Webinar Series. “Shifting Services in Community-Based Organizations: Meeting the Needs of People with I/DD.” At 1 p.m., with Susan L. Silberman, National Council on Aging. Sponsored by Health Matters Program, Department of Disability and Health, UIC, and Aspire Chicago. https://www.healthmattersprogram.org/
AUG. 21: I/DD Provider Networking Group Webinar, “Understanding Dual Diagnoses and the use of the DM-ID 2”. 9-11 a.m. Co-sponsored by Riveredge Hospital, Streamwood Behavioral Health System and the Community Mental Health Board of Oak Park Township. Trainers: Mike Jersey and Emily Dietze of IL Crisis Prevention Network. https://www.ipha.com/#gsc.tab=0
AUG. 27: Webinar, “Taking Care: Planning for the future of children with special needs”. At noon, with Annette Hammortree, financial planner/parent; Brian Rubin, attorney/parent; and Steve Boisse, recently retired CEO, DayOne Pact. Sponsored by Guardian Life Insurance Company. For registration information: [email protected].
OTHER STUFF . . .
30TH ANNIVERSARY OF A.D.A.: These three leaders in Illinois’ disability world applauded the great things the ADA has done, but each had some major disappointments to share as well . . .
JODI NEWMARK, Encompass/Jewish United Fund: “. . . Reading a New York Times article, I was reminded that for people with disabilities, life is much better today than before passage of this seminal civil rights legislation. . . . However, the fact is that the ADA promises ‘access to transportation, jobs, schools, and other public places and to the same opportunities as anyone else’. We have a long path ahead to making that promise a reality. In most cities public transportation is not fully accessible, unemployment is far higher for people with disabilities relative to those without disabilities, and in Illinois, there are more people with disabilities who are continuing to live in state operated institutional settings than almost any other state.”
MEG COOCH, Arc of IL: “. . . The ADA has resulted in many more children and adults with disabilities being able to access employment, housing, transportation and schools across the country. Here in Illinois, however, the dream of the ADA is not yet fulfilled. We struggle as a state to offer community living options, accessible affordable supportive housing, and employment for all who want them. We struggle as a state to provide enough funding so that people with more significant needs can have real choices about where and how they live. We struggle to ensure safety, supports and equitable access to services for people with disabilities of color in particular.”
KAREN TAMLEY, Access Living, who was at the White House when President George H.W. Bush signed the ADA into law: “. . . As we commemorate phenomenal progress for people with disabilities, there's still much work to be done. The COVID-19 pandemic has highlighted the inequities disabled people have long faced. The death-rate has soared for those with underlying health conditions we know as disabilities, particularly for Black and brown people. As the virus spreads throughout nursing homes and institutions that segregate disabled people, it has exposed how desperately we need investments in community-based services. Disabled people are disproportionately unemployed, and in Chicago the poverty rate is twice as high for disabled people compared to people without disabilities. These are stark reminders that the promises of the ADA have yet to be fulfilled.”
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MEDICAID: IL Medicaid has waived their co-pays for services and products during the pandemic. They also have announced that no one’s benefits will be cancelled during the pandemic. Additionally, a glitch in the Medicaid computer system has resulted in many Waiver recipients being notified that their benefits may end because their spend-down has not been met. That is a mistake and it is being corrected. (Thanks to Sherri Schneider of the Arc for this information.)
WHAT’S YOUR LIFE LIKE DURING THE PANDEMIC?: The UIC Dept. of Disability & Human Development is collecting experiences of people with disabilities living during the COVID-19 pandemic, using mapping as a form of storytelling. https://mappingdisability.digital.uic.edu/
THE CONSULTING PRACTICE . . .
GROWING!: Cahill & Associates of Naperville is the latest law firm to become an affiliate of McManus Consulting. We currently have 52 affiliated organizations, including five disability-related law firms. Mary Denise Cahill founded the firm after a long career as an attorney for the Chicago Board of Education. The firm represents children and adults with special needs, especially with regard to special education, and also handles guardianships and trusts. https://cahillassociateslaw.com/
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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 Mental Health Board, Malcolm Eaton Enterprises, Milestone, 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.