Illinois Home Medical Equipment Vendors Worried About States Medicaid Managed-Care Reboot

A company hired to reboot Illinois’ Medicaid managed-care program plans significant cuts in payments for medical equipment, a move that providers say will hurt low-income patients and make it harder for them to be cared for at home.

Solid Article by Dean Olsen for the State Journal-Register | Nov 18, 2017                                        
IlliniCare Health, a company based in Elk Grove Village that is part of publicly traded Centene Corp., plans cuts of 10 percent to 50 percent in payments next year to vendors who sell equipment such as wheelchairs, portable oxygen, adult diapers, feeding tubes and ventilators.

Those cuts could push some medical providers out of business and persuade others to not participate in IlliniCare’s network, said Kevin Stewart, president of the Great Lakes Home Medical Services Association. He also contended companies that stay in the network might survive by skimping on the quality of supplies or amount of professional support that patients receive.

“Patients are going to be backed up in the hospital, which is going to cost the state more money in the long run,” Stewart said.

Medical equipment providers across the country have already been hit with fee reductions through the federal Medicare program’s “competitive bidding” program, with 45 percent of supplier companies going out of business or leaving Illinois since 2013, said Kam Yuricich, executive director of the Great Lakes association.

John Hoffman, spokesman for the Illinois Department of Healthcare and Family Services, the agency overseeing the managed-care reboot, said IlliniCare and others with state contracts are paid a fixed amount per patient.

Excessive health-care costs will eat into the companies’ profits, so managed-care organizations have a financial incentive to provide good service, Hoffman said.

“The healthier people are, the better it is for the company,” he said.

Officials from IlliniCare and St. Louis-based Centene didn’t return phone calls and emails from The State Journal-Register last week. A spokeswoman from the Illinois Association of Medicaid Health Plans couldn’t be reached for comment.

Testing the waters’
IlliniCare, based in Elk Grove Village near Chicago, is one of seven managed-care organizations (MCOs) that won state contracts for the Jan. 1 launch of the next phase of managed care affecting more than 80 percent, or 2.7 million, of Illinois’ 3.14 million Medicaid recipients.

Durable medical equipment in fiscal 2016 accounted for about $101 million, or one-half of 1 percent, of Illinois’ $20 billion-plus Medicaid program. But vendors said home-based services are essential for patients to avoid hospitalizations and readmissions that can be much more expensive for the state.

Members of the Great Lakes association, which covers Illinois, Indiana and Michigan, worry that IlliniCare’s rate cuts will be picked up as a model by other managed-care organizations in Illinois and in other states where managed care is being used to contain cost increases in the federal-state Medicaid program.

“They’re testing the waters to see whether this works,” Stewart said. “It’s a dangerous test.”

State Sen. David Koehler, D-Peoria, said he introduced Senate Bill 2262 earlier this month to require managed-care organizations pay medical vendors at levels at least equal to the traditional “fee-for-service” rates in response to providers’ concerns.

Koehler said he expects the bill to be considered by the General Assembly early in 2018.

Like many Democrats in the legislature, he is skeptical about the state’s move to managed care for Medicaid recipients, a trend that has been embraced by Gov. Bruce Rauner and other Republicans.

“This whole thing is a mess, and it’s going to cause people who depend on Medicaid to get less service,” Koehler said. “We’ve set this up so MCOs make money by denying services.”

Hoffman said Healthcare and Family Services “is committed to ensuring that health plans offer Medicaid members the services and equipment they are entitled to.”

“Under managed care,” he said, “it is the responsibility of the health plans and providers to negotiate with each other to accomplish this within the framework of contracts, laws and rules overseen by the department.”

Cost savings
IlliniCare billed the state for $1.4 billion in services in the fiscal year that ended June 30, Hoffman said. That money went to pay for health care as well as IlliniCare’s internal costs and profits.

Healthcare and Family Services estimates that the reboot, dubbed HealthChoice Illinois, will lead to annual savings of $200 million to $300 million.

That’s more than $1 billion in total savings during the life of the four-year contract compared with the current managed-care system serving 63 percent of Medicaid recipients, Hoffman said.

However, there is “not a great deal of evidence” that managed care saves money for state Medicaid programs or improves care for beneficiaries, according to Robin Rudowitz, associate director of the nonpartisan Kaiser Family Foundation’s Program on Medicaid and the Uninsured.

By shifting financial risk to for-profit companies and other groups, managed care does give states more predictability when it comes to the cost of Medicaid, she said.

Medicaid costs per recipient have been rising less than costs in the private health insurance system, she said.

Healthcare and Family Services officials say the reboot in Illinois is designed so payment of vendors will be streamlined. The process of receiving and acting on complaints will be streamlined, too, Hoffman said.

The Illinois Academy of Family Physicians is “working in good faith” with the state and MCOs on the reboot, and everyone involved seems interested in seeing the initiative succeed, according to Gordana Krkic, the Bolingbrook-based group’s deputy executive vice president for external affairs.

Worries at home
Such assurances don’t ease the worries of some Illinoisans.

Rebekah Strate, a Murrayville resident, is raising two children with complex medical needs who use equipment to keep them breathing. Strate said she is worried that she will lose her children’s current DME provider, Memorial Home Services, in the reboot.

If 9-year-old McKenzie or 10-year-old Miracle don’t receive equipment and supplies that work best for their conditions, or if replacements aren’t provided right away when supplies run out, the girls can end up in the hospital or worse, Strate said.

McKenzie joined the Strate family as a foster child and since has been adopted. She continues to be covered by Medicaid.

Miracle is still a foster child and is being adopted by the family.

A special provision in the reboot will place all 16,200 children who are in the care of the Illinois Department of Children and Family Services, as well as 23,000 others, including former DCFS wards who have been adopted, into IlliniCare’s managed-care network. The children currently are served in the fee-for-service system, no matter where they live in Illinois.

It’s unclear whether Memorial Home Services, which currently serves the Strate children, will be part of IlliniCare’s network. The contract affecting DCFS clients is expected to begin July 1, 2018.

“Memorial Health System has not finalized contracts yet with any Medicaid managed-care organization, but we are having conversations with most of them, including IlliniCare,” Memorial spokesman Michael Leathers said last week. “Three of the four MCOs have not yet provided contract proposals for our review, but we have been and continue to be in discussions with them.”

Rebekah Strate, 42, a homemaker, and her husband, Jeff, 45, a pharmacy technician, switched from a national medical vendor to Memorial for the children two years ago after a crisis involving McKenzie.

The national company was slow to provide a new $50 nebulizer for McKenzie for breathing treatments after the old one broke, Rebekah Strate said.

She said the delay resulted in breathing problems for McKenzie, who has a tracheostomy and chronic lung disease, and a subsequent stay in the emergency department of Jacksonville’s Passavant Area Hospital. The hospital provided a new nebulizer and apparently billed Medicaid for the equipment and ER visit, she said.

By contrast, a Memorial respiratory therapist has been available immediately by phone, and Memorial has driven equipment and supplies to the family’s Morgan County home, rather than wait for the mail, to make sure the children get good service, Strate said.

There are about 1,000 “medically fragile” children in Illinois, like those in the Strate family, who could be put in jeopardy if IlliniCare skimps on care, said Susan Agrawal, a Chicago resident and founder of a support group for parents of kids in the Medically Fragile and Technology Dependent waiver program.

“Companies hope parents and other caregivers will pick up the slack,” Agrawal said.

DCFS spokesman Neil Skene said IlliniCare has experience serving clients in the child-welfare system in Washington state, Florida and Texas.

DCFS, through careful monitoring, will work so that the fears voiced by Strate and Agrawal about the Medicaid managed-care reboot don’t become reality, Skene said.

“We’re going to make sure it doesn’t adversely affect any child,” he said.

http://www.sj-r.com/news/20171118/home-medical-equipment-vendors-worried-about-medicaid-managed-care-reboot
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About Illinois’ Medicaid managed care plan
Medicaid recipients in the Springfield area currently aren’t served by IlliniCare or any other managed-care groups, but that will change in 2018.

Managed-care networks stopped operating for the counties of Sangamon, Menard, Logan, Christian, Macon and Piatt earlier this year after companies and health-care providers withdrew.

As in other parts of the state, many providers complained about payment delays and payment denials.

For the six counties including Sangamon, and the other Illinois counties currently in Medicaid managed care, the reboot begins Jan. 1. Managed-care organizations, or MCOs, are setting up their provider networks, and patients are receiving notices in the mail asking them to choose an MCO or be automatically enrolled in one.

For all other counties, including Morgan, Cass, Macoupin, Montgomery, Mason, Greene and Jersey, the reboot takes effect April 1.

As part of the reboot, the state awarded contracts to seven MCOs, a smaller number than are in the current managed-care system.

Five plans will operate in all 102 counties — IlliniCare, Blue Cross and Blue Shield of Illinois, Meridian Health Plan, Molina Healthcare and Harmony Health Plan. CountyCare and NextLevel will operate only in Cook County.

IlliniCare currently serves 211,000 in the Chicago, Rockford and Quad Cities areas.

Illinois State Workers to Appeal Union Fees Case to US Supreme Court, Effects Home Care Workers

CHICAGO (AP) — Two state workers who joined Illinois Republican Gov. Bruce Rauner's lawsuit arguing labor unions shouldn't be allowed to collect fees from non-members say they're appealing to the U.S. Supreme Court.

The Seventh Circuit Court of Appeals upheld a lower-court ruling Tuesday that allowed unions to collect the "fair share" fees from workers covered by collective bargaining agreements.

The U.S. Supreme Court has previously found the fees constitutional. The justices split 4-4 on another case challenging the fees last year.

Jacob Huebert, an attorney for the Illinois workers, says they're pleased the ruling could allow the issue to be before the Supreme Court again.

American Federation of State, County and Municipal Employees President Lee Saunders says Tuesday's ruling protects workers' rights.

Rauner sued to halt the fees in 2015. It's was a move critics called an attack on organized labor.

Copyright 2017 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Home Health Agency Owner Godwin Oriakhi Convicted for Defrauding Medicare & Medicaid of $17 Million

Houston Home Health Agency Owner Sentenced to 480 Months in Prison for Conspiring to Defraud Medicare and Medicaid of More Than $17 Million

WASHINTON – The owner and operator of five Houston-area home health agencies was sentenced on Thursday to 480 months in prison for conspiring to defraud Medicare and the State of Texas’ Medicaid-funded Home and Community-Based Service (HCBS) and Primary Home Care (PHC) Programs of more than $17 million and launder the money that he stole from Medicare and Medicaid. The HCBS and PHC Programs provided qualified individuals with in-home attendant and community-based services that are known commonly as “provider attendant services” (PAS). This case marks the largest PAS fraud case charged in Texas history.

Acting Assistant Attorney General Kenneth A. Blanco of the Justice Department’s Criminal Division, Acting U.S. Attorney Abe Martinez of the Southern District of Texas, Special Agent in Charge Perrye K. Turner of the FBI’s Houston Field Office, Special Agent in Charge C.J. Porter of the Department of Health and Human Services Office of the Inspector General’s (HHS-OIG) Dallas Regional Office, Special Agent in Charge D. Richard Goss of IRS Criminal Investigation’s (CI) Houston Field Office and the Texas Attorney General’s Medicaid Fraud Control Unit (MFCU) made the announcement.

Godwin Oriakhi, 61, of Houston, was sentenced by U.S. District Judge Sim Lake of the Southern District of Texas. In March 2017, Oriakhi pleaded guilty to two counts of conspiracy to commit health care fraud and one count of conspiracy to launder monetary instruments.

According to admissions made as part of Oriakhi’s plea, he, his co-defendant daughter and other members of his family owned and operated Aabraham Blessings LLC, Baptist Home Care Providers Inc., Community Wide Home Health Inc., Four Seasons Home Healthcare Inc. and Kis Med Concepts Inc., all of which were home health agencies in the Houston area. Oriakhi admitted that he, along with his daughter and other co-conspirators, obtained patients for his home health agencies by paying illegal kickback payments to patient recruiters and his office employees for hundreds of patient referrals. In his plea, Oriakhi also admitted that he, along with his daughter and co-conspirators, paid Medicare and Medicaid patients by cash, check, Western Union and Moneygram for receiving services from his family’s home health agencies in exchange for the ability to use the patients’ Medicare and Medicaid numbers to bill the programs for home healthcare and PAS services. Oriakhi admitted that he, his daughter and their co-conspirators also directly paid some of these patients for recruiting and referring other Medicare and Medicaid patients to his agencies. Additionally, Oriakhi admitted that he, his daughter and other co-conspirators paid physicians illegal kickbacks payments, which Oriakhi and his co-conspirators called “copayments,” for referring and certifying Medicare and Medicaid patients for home health and PAS services.

Oriakhi further admitted that each time he submitted a claim predicated on an illegal kickback payment he knew he was submitting a fraudulent claim to Medicare or Medicaid based on his false representations that the claim and the underlying transaction complied with the federal Anti-Kickback Statute and other state and federal laws. Oriakhi further admitted that he knew that Medicare and Medicaid would not otherwise pay for the fraudulent claims, according to his plea. In addition to the home health care and PAS services fraud scheme, Oriakhi admitted that he and his co-conspirators used the money fraudulently obtained from Medicare and Medicaid to make illegal kickback payments to patient recruiters, employees, physicians and patients to promote the Medicare home health and Medicaid PAS fraud conspiracies, and ensure their successful continuation.

In total, Oriakhi that he and his co-conspirators submitted approximately $17,819,456 in fraudulent home healthcare and PAS claims to Medicare and Medicaid and received approximately $16,198,600 on those claims.

To date, three others have pleaded guilty based on their roles in the fraudulent scheme at Oriakhi’s home healthcare agencies. Oriakhi’s daughter, Idia Oriakhi, and Charles Esechie, a registered nurse who was Baptist’s primary admissions nurse, each pleaded guilty to one count of conspiring with Oriakhi and others to commit health care fraud. Jermaine Doleman, a patient recruiter, pleaded guilty to conspiring with Oriakhi and others to commit health care fraud and launder money. Doleman was also charged in two other healthcare fraud cases. Esechie was also sentenced on August 17, to 60 months in prison. Idia Oriakhi and Jermaine Doleman are awaiting sentencing.

The case was investigated by the IRS-CI, FBI, HHS-OIG and MFCU under the supervision of the Criminal Division’s Fraud Section and the U.S. Attorney’s Office for the Southern District of Texas. The case is being prosecuted by Senior Trial Attorney Jonathan T. Baum and Trial Attorneys Aleza S. Remis and William S.W. Chang of the Fraud Section of the Justice Department’s Criminal Division.

The Fraud Section leads the Medicare Fraud Strike Force, which is part of a joint initiative between the Department of Justice and HHS to focus their efforts to prevent and deter fraud and enforce current anti-fraud laws around the country. The Medicare Fraud Strike Force operates in nine locations nationwide. Since its inception in March 2007, the Medicare Fraud Strike Force has charged over 3,500 defendants who collectively have falsely billed the Medicare program for over $12.5 billion.

To learn more about the Health Care Fraud Prevention and Enforcement Action Team (HEAT), go to www.stopmedicarefraud.gov.

Source: press release Aug. 18, 2017https://www.justice.gov/opa/pr/houston-home-health-agency-owner-sentenced-480-months-prison-conspiring-defraud-medicare-and

Illinois Home Health Workers & SEIU File Class Action Suit Against The State of Illinois to Force Pay Raise

CHICAGO (CN) – A class of home health care workers and personal assistants claims Illinois refuses to increase their wages by 48 cents per hour even though the pay raise was mandated by an amendment to state law that took effect last month.
Article by DIONNE CORDELL-WHITNEY, for CourtHouse News | Sept 7, 2017

Service Employees International Union Healthcare Illinois & Indiana and three members filed a class-action complaint Wednesday against Illinois Department of Human Services Secretary James Dimas and Michael M. Hoffman, acting director of the state’s Department of Central Management Services.

Lead plaintiff Virginia Grant and two other state workers, Alantris Muhammad and Cynthia Sylvia, brought the Cook County Circuit Court lawsuit seeking to require Illinois to implement a 48-cent-per-hour wage increased mandated by the Illinois Public Act.

According to the complaint, the law was amended in July to include the 48-cent raise for workers in the DHS Home Services Program, which was set to take effect Aug. 5.

“Nonetheless, and contrary to Illinois statute, the DHS Secretary and CMS Director have failed and refused to implement that wage increase,” the lawsuit states. “As a result of defendants’ unlawful actions, some of the state of Illinois’ lowest paid employees (personal assistants currently make only $13 an hour), who provide the vital service of assisting people with disabilities to live safely and independent in their homes, have been denied a needed raise to which they have a legal right.” (Parentheses in original.)

Grant says she has worked as a personal assistant in the DHS Home Services Program since 2003. The program provides home care services to people with severe disabilities. Workers include personal assistants, registered nurses, licensed practical nurses, certified nursing assistants, and physical, occupation, and speech therapists, according to the lawsuit.

About 28,000 providers represented by the union work in the program, and the majority of the workers are personal assistants, the complaint states.

Though the Service Employees International Union and Illinois are currently in negotiations for a replacement to a 2012-2015 collective bargaining agreement, the old wages are still in effect, the workers say.

The amendment to the Illinois Public Act mandating the pay increase passed on July 6, after both houses of the General Assembly voted to override Gov. Bruce Rauner’s veto of the bill, according to the lawsuit.

Grant and her co-plaintiffs say the DHS has the legal authority to give the mandated raises to Home Services Program workers because funds have been appropriated for the program.

In response to the workers’ demand for a wage increase, a representative for the DHS allegedly told the union that it would implement the wage increase only after bargaining with the union.

“Just as with other statutory increases in minimum labor standards, such as a statutory minimum wage increase, DHS and CMS are not obligated to bargain with SEIU before implementing the $0.48 wage increase for personal assistants and individual maintenance home workers,” the complaint states. “Alternatively, to the extent such a duty to bargain exists under the Illinois Public Labor Relations Act, such duty was fulfilled when SEIU…consented to DHS and CMS implementing the wage increase effective August 5, 2017.”

DHS spokesperson Jason Schaumburg said in a statement that Illinois and unions are required to engage in collective bargaining over wages under the Illinois Public Labor Relations Act.

“Under that same statute, the agreements the State and the union reach over wage increases take precedence over any conflicting law. The Labor Act also requires both the State and unions to abide by the status quo while they are bargaining over a new collective bargaining agreement,” he said. “The State and SEIU have been engaged in such negotiations as recently as late last month. The State remains willing to discuss issues with SEIU that are properly subject to collective bargaining, including wages, and calls on SEIU to use the statutorily-required bargaining process rather than seek to make an end run around that process through litigation.”

The union and its workers are represented by lead attorney Robert E. Bloch with Dowd Bloch in Chicago.

https://www.courthousenews.com/home-health-workers-sue-illinois-force-pay-raise/

Wade Blank 1940-1993, Disability Rights Movement Advocate Remembered

The following history of ADAPT's founder Wade Blank, a non-disabled former nursing home recreational director who assisted several residents to move out and start their own community. The Atlantis Community. The below article from the Ragged Edge- July/August 1993 will offer a look into the history and achievement's of Wade Blank and fellow advocates. Also below is a remembrance by Justin Dart after the unexpected passing of his friend, and fellow advocate.
# # #

Article published by the Ragged Edge- July/August 1993.

Wade Blank

The death of the Reverend Wade Blank on February 15, 1993, left a profound emptiness in the hearts of many people who loved and respected him. But any void in the disability rights movement is only momentary, for Blank left behind scores of human values, a keen analysis – and scores of skilled, committed leaders ready to carry the movement forward.

American Disabled for Attendant Programs Today (ADAPT) and its mother, the Atlantis Community in Denver, both embody the spiritual, organizational and strategic lessons Blank carried over from the 1960s black civil rights movement. He had been a Presbyterian minister, a War on Poverty field organizer and a disciple of Dr. Martin Luther King, jr., before becoming an orderly, then an assistant administrator, in a Denver nursing home.

Liberated Community
Early in his career as a iconoclastic minister and civil rights worker, Blank developed the concept of a "liberated community" – a society where human beings could live in equality and develop the power to effect change. When, at the Heritage House nursing home, he found himself in the midst of a "community" of people with severe disabilities, whose only community structure was one of oppression – the confines of the institution – he took on the challenge of making the "liberated community" a reality.

It all started when Blank came to Denver seeking a change. "The nursing home industry in Denver recruited its nursing home administrators from the ranks of ex-ministers," he recalled recently… A nursing home executive called Blank. "They said, ‘You’re young. You’re hip. Could you start a youth wing for us?’ So, I started a youth wing."

Hired by Heritage House in December 1971, Blank went to visit the residents the evening before he began his new job. "I remember for dinner that night we had baked potatoes, applesauce and scrambled eggs, and that was near Christmas. The place was like a morgue. The food was cold." Blank chatted with severely disabled individuals, some of whom would later become ADAPT organizers. "Little did I know," Blank recalled, "that I was to enter the most important moment of my life.

"I had 60 young people I recruited. Every morning at 7:30, they’d get dressed and get on a school bus, and go to a workshop and count fish hooks. Called it (a) work activities program."

At council meetings of the young people, the residents made simple requests, and an idealistic Blank tried to implement them. "I let them evaluate the nurses," he said. "They wanted co-ed living. They wanted to have pets. They wanted to have rock ‘n’ roll bands. So three years into this experiment, the nursing home is just like a college dorm on a crazy weekend all the time.

"I was trying to change it from inside, and I didn’t understand the monster I worked for," he recalled.

Outside of the Home
In 1975, Blank proposed "that we move a few of them out into apartments, and we let the aides and orderlies punch in at the nursing home, then go to the apartment and give them service." That idea got Blank fired. "The nursing home saw where I was going, and they couldn't let me go in that direction."

Once Blank was fired, the nursing home erased all his reforms. "They came in and they took all the stereos and TVs out of everybody’s rooms, had the dog pound come by and get all the animals and in one day it went from everything I’d built for four years – to that."

But Blank wasn’t about to give up. Thinking to himself that he’d "recruited all these people to this hell," he decided simply to move them out "and do the care myself…

Atlantis Community
"Within the first six months, I’d moved 18 severely disabled people out. So now I was wed to the concept. You know, I couldn’t walk away from it."

That exodus laid the foundations for the Atlantis Community and its political-action offshoot, ADAPT. "We began t learn about power and what empowerment is, and how to use it," Blank said. While Atlantis was liberating people from nursing homes, ADAPT (which then stood for American Disabled for Accessible Public Transit) took on discrimination in Denver’s, and then the nation’s, bus systems. Using non-violent, direct-action tactics similar to King’s movement, ADAPTers made bold demands and achieved extraordinary results.

Blank had found himself at the center of another civil rights campaign, similar to the one he had seen African Americans wage. "All the issues are the same," Blank asserted. "The black movement wanted to ride the buses equally. The black movement wanted to eat at the Woolworth’s counters. The black movement wanted the right to vote. The black movement wanted the right to keep their families together. The black movement wanted the right to be integrated into the school system. That’s what the disability rights movement wants, exactly…

"My members are into confrontation. We’ll tell somebody what we want, and we’ll talk about it once or twice, but that’s it. Then we deal with you. Either we’ll shut you down or whatever."

Confrontation worked, Blank believed, because it took society’s fears – those fears we’re always trying to dispel in disability awareness workshops – and turned them to a new use…

"So I said," (Blank explained, recalling earlier successes in the black civil rights movement), "…‘Let’s take 25 wheelchairs and go out and surround a bus and hold it and see what happens." Bam! Just like magic. It worked. Total power. Police couldn’t move the wheelchairs because they were afraid. The mayor said, ‘Don’t arrest disabled people.’ We win…"

Focus on Fundamental Human Rights
Blank’s focus on fundamental human rights and on the most impoverished members of the disability community distanced him from more affluent groups. In this, too, he emulated Martin Luther King. "King involved the poorest in the community," Bank said, "and a movement cannot really change things unless they address the poorest, the least. When King was shot, he was beginning to attack the ghettos." For Blank, "Our ghettos are the nursing homes, and we need to address the ghetto."

Blank attacked not only the mainstream disability movement’s economic hierarchy but also its disability hierarchy. "You go around to independent living centers and you’ll see a lot of post-polios and a lot of spinal cord injuries," he said. "But you won’t see people that slobber and can’t speak clearly…" These are the people often excluded or left behind by more "respectable" advocacy organizations, he pointed out…

Blank found leadership qualities in people who had never before thought of being leaders: former nursing home residents, people with speech impairments, people labeled retarded and others typically disenfranchised both by society at large and by traditional disability organizations. Blank had little patience for people who put their own egos or their own careers above the movement.

But more people were and are being empowered every year to free Americans with disabilities from institutions. All are encouraged to help plan protests, identify issues and targets, hold press conferences, and become a part of the "liberated community."

# article originally published in the Ragged Edge- July/August 1993

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photo: Wade Blank with his son Lincoln and fellow Atlantis cofounder Michael Auberger celebrate the laying of the plaque, dedicated to the original protesters - The Gang of 19 - who blocked the intersection to protest the inaccessible buses in 1978.

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The Reverend Wade Blank, 1940-1993 is a tribute to Wade Blank written by Justin Dart in 1993.

Press Release in 1993:                                                                                                                            

The President's Committee on Employment of People with Disabilities 

Justin Dart, Chairman

The Reverend Wade Blank, 1940-1993

Disability rights leader Wade Blank died on February 15 in rough seas off of a beach at Todos Santos, Mexico. He was trying, unsuccessfully, to save his drowning eight year old son, Lincoln.

It is always a tragedy when great lives are cut short by apparently preventable events. But to dwell on the tragedy of Wades Blank’s death would be a very large disservice to the future. Wade’s life is the message. His existence was a towering triumph that demands to be shouted, to be heard, to be acted on.

Unlike others who participated in the sixties revolution for a rational society, Wade did not give up the struggle when it became unfashionable. In 1974 he founded [the first Center for Independent Living in Colorado,] the Atlantis Community in Denver – a radical program to enable people with severe disabilities to leave the isolation of nursing homes and live in the mainstream. Atlantis was a success. But it soon became apparent that the mainstream itself was polluted by devastating discrimination which prevented people with disabilities from fulfilling their humanity.

In the tradition of Martin Luther King, Wade made equal access to bus transport the symbol of full equality: “Rosa Parks protested the indignity of being forced to sit in the back of the bus. We can’t get on the bus at all.” On July 5th and 6th, 1978, he and nineteen people with disabilities illegally detained an inaccessible bus at the intersection of Broadway and Colfax in Denver. ADAPT was born – American Disabled for Accessible Public Transit. During the next twelve years hundreds of ADAPT activists blocked buses, streets, hotels and government buildings across North America. They filled the police records of the jails of Atlanta, Chicago, Dallas, Detroit, Houston, San Francisco, Los Angeles, Cincinnati, St. Louis, Little Rock, Philadelphia, Phoenix, Reno, Montreal and Washington, DC. Wade, Mike Auberger, Bob Kafka, Mark Johnson, George Roberts, Larry Ruiz, Rick James, Stephanie Thomas and Anita Cameron were arrested 15-30 times each. Molly Blank, Babs Auberger, Frank McComb, Lori Eastwood, Bobby Simpson, Melvin Conrady, Beverly Furnice, Joe Carle, Karen Tarnley, Ann Sawtel, Sue Davis, Diane Coleman and many others were co-heros in the long struggle.

In March of 1990, with the fate of the ADA hanging in the balance, Wade organized the historic march of disability rights leaders from the White House to the US Capitol to demand a law that would provide full equality, “with no weakening amendments.”

People with severe disabilities crawled up the Capitol steps and were arrested demonstrating in the rotunda. ADA passed in July – with no weakening amendments. Without the courage and inspiration of Wade Blank and his colleagues, the world would not have its first comprehensive civil rights law for people with disabilities.

After the passage of ADA, knowing that the job of justice was far from completed, Wade and the members of ADAPT refocused their advocacy. They demanded that the federal government provide funds for personal assistance services that would enable persons with disabilities now trapped in nursing homes to live free in their communities. The demonstrations – and the arrests – continue. Progress is being made. President Clinton has promised to form a task force that will create a national program of personal assistance services.

Some – mostly those that didn’t know him – have said that Wade’s methods were “extreme.” They said that civil disobedience in the eighties and nineties is “passe,” “obsolete,” “inappropriate.” The same kinds of things were said about Washington, Jefferson, Gandhi and Martin Luther King. What is extreme, what is inappropriate is millions of human beings living with less dignity than we accord to our pet dogs and cats. What is inappropriate is American citizens imprisoned without due process of law in oppressive institutions and rat infested back rooms. What is inappropriate is people with disabilities living and begging in the streets. What is inappropriate, what is unspeakably immoral, is a society that cannot be bothered to make the simple changes necessary to give its own children the opportunity of full humanity.

It has been my privilege to work closely with Wade Blank during the last several years. He demonstrated against a meeting I chaired – when HHS Secretary Louis Sullivan spoke at the 1991 PCEPD annual conference in Dallas. We counseled together by telephone at all hours of the day and night. We served together on the ADA Congressional Task Force and in negotiating ADA with the President of Greyhound. We marched together for equality in San Francisco, Philadelphia and Washington. We were together in the freezing midnight outside the barricaded Department of Transportation in Washington. I never put myself in a position to be arrested. Wade said that was alright, because I could play a positive role within the system. I was never sure in my heart that I was on the right side of the bars. I knew he was.

Wade Blank was a sensitive philosopher of Democracy. He was a superb organizer. He was a mature, sophisticated politician. He had total honesty and total follow through. You could take his promises to the bank. These are rare and good qualities, but they alone would not have enabled him to use an unfashionable method to lead an unfashionable cause to an historic victory.

Wade had a magic sword. It was love. Unlike many with religious labels, he understood and lived the central commandment of his God, “that ye love one another as I have loved you.” He understood that love is not just smiling at nice people, but passionate, lifelong action to preserve and enlarge the joy, the dignity, the quality of every human life. He understood that love does not smother with criticism, care and control; it encourages, emancipates and empowers. He understood that love for all means justice for all.

Wade’s leadership of love made ADAPT the family for those who had no family, the family with justice, with hope, with transcending fulfillment. Wade’s love warmed and empowered us all. It breached the defenses and won the respect of Congresspersons, businesspersons, policepersons, jailers, judges and mayors. Again and again, it lifted my heart and my mind from selfcentered desperation of Washington politics to the dream.

Before he died, Wade planned a series of demonstrations for personal assistance services to be held in Washington, DC, on May 9th, 10th and 11th. These will go forward in his honor. There will be a tribute to him on Sunday, May 9th, at the Lincoln Memorial. Let us join together in memory of Wade – on May 9th, today, tomorrow, as long as life remains – to continue his struggle for a truly human society.

Let us pick up his sword of love and truth and courage, and use it – each in our own way – to cut the chains of all who are slaves to pity, prejudice and paternalism. Let us join in one voice to shout his shout – “free our people.” Let us embrace his golden heritage of responsible action for life, enlarge it in our own lives, and invest it in the lives of all who will come.

Wade, we love you. That’s easy. We will try our best to love each other as you loved us.

– Justin Dart
# # #

"How Wade Blank Became a Disability Activist"
John Holland of Denver, Colorado speaks about working at the forefront of disability civil rights law as he protested and advocated alongside Wade Blank.
The is part of the "It's Our Story" project, there are many additional videos telling of the history and the people of the Disability Rights Movement.

YouTube published by It's Our Story

Some Illinois Caregivers Get Small Raise In Pay, Another Court Filing Can Cost The State - Again

Illinois - After frequent stories of caregivers earning around $10 an hour even after years of work, suburban aides who care for people with disabilities are getting a pay raise.

Article by Kerry Lester for the Daily Herald | July 17, 2017                                                           
The 75-cent-an-hour raise -- buried deep within the state budget passed earlier this month by the legislature -- will cost the state $53 million next year and go to 34,000 workers. Average pay statewide will increase from its current $9.35 to $10.10 an hour.

Ray Graham Association President and CEO Kim Zoeller tells me the move certainly is appreciated but it's far from enough. The DuPage County nonprofit has more than 90 of its 250 caregiver positions open after many workers left for higher-paying jobs in fast food or retail.

With those gaps, Zoeller says, the agency no longer is able to devote time to take residents into the community for such things as church services or grocery shopping. Ray Graham serves 2,000 disabled children and adults in the suburbs and operates 23 group homes.

New campaign                                                                            

Zoeller says after the "dust settles" in Springfield over the passage this month of the state's first budget in two years, a coalition of 60 organizations employing caregivers and calling itself "They Deserve More" will begin to lobby lawmakers and Gov. Bruce Rauner anew.

"With Cook County's recent minimum wage hike (to $13 an hour by 2020), it makes it even more critical for providers to have that funding in order to be competitive," Zoeller says.

For More of the article: CLICK
Equip For Equality court filing:

• Ligas brief filed in support of Motion to Enforce Consent Decree (PDF)

2017 State Scorecard on Long-Term Services and Supports, AARP report

Washington State and Minnesota are top-ranked states again, but all states lag in helping care for the growing populations of people aging and living with disabilities

With baby boomers beginning to turn 80 in 2026, states must accelerate the pace of improving long-term services and supports (LTSS) for older people and adults with disabilities, according to AARP’s new state scorecard released today. The report, Picking Up the Pace of Change: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers (“Scorecard”), shows that although most states have made some progress, the pace of change overall remains too slow and has not kept up with demographic demands.

LTSS include assistance with activities of daily living provided to older adults and people with disabilities who cannot perform these activities on their own because of physical, cognitive, or chronic health conditions. The types of assistance include such things as help with bathing, dressing, managing medications, preparing meals, and transportation, as well as support for family caregivers.

“This Scorecard sounds the alarm, but it also provides a range of tools states can use to spark new solutions and create systems that are aligned with the new realities of aging and living with a disability,” said Susan Reinhard, R.N., Ph.D., Senior Vice President and Director, AARP Public Policy Institute. “The proposed cuts to Medicaid—the largest public payer of long-term assistance—would result in millions of older adults and people with disabilities losing lifesaving supports.”

The Scorecard was funded by AARP Foundation, The Commonwealth Fund, and The SCAN Foundation. This is the third edition of the Scorecard.

How States Are Ranked
The Scorecard ranks states based on their performance on LTSS in five main categories:

• Affordability and access
• Choice of setting and provider
• Quality of life and quality of care
• Support for family caregivers
• Effective transitions between nursing homes, hospitals, and homes.

Within the five categories, states are scored on their performance in 25 specific indicators, including such things as Medicaid spending, nursing home cost, home health aide supply, antipsychotic medication use in nursing home residents, long nursing home stays, employment rate of people with disabilities, and support of working caregivers. (See report for full list.)

“This new Scorecard shows that it’s time for all states to accelerate care improvements for older adults and people with disabilities,” said Bruce Chernof, M.D., FACP, President and CEO of The SCAN Foundation. “States that consistently rank at the top have strategically planned for their aging population across the main sectors of health, housing, transportation and family caregiving.”

Good News/Bad News
Overall, states made incremental LTSS improvements since the previous report in 2014, but the pace of change has been slow and uneven. However, two states—Tennessee and New York—showed the most improvement across measures since the last Scorecard.

States made the most significant progress in reducing inappropriate “off label” use of antipsychotic medications among nursing home residents and increasing support of family caregivers.

In general, states showed the most significant declines in employment rates for people with disabilities and rates of transitioning long-stay nursing home residents back into the community. Notably, the majority of states showed no real change on “Affordability and Access,” meaning that the cost of LTSS over time continues to be much higher than what the majority of families can afford.

5 Top-Ranked States	5 Bottom-Ranked States
#1 Washington	#51 Indiana
#2 Minnesota	#50 Kentucky
#3 Vermont	#49 Alabama
#4 Oregon	#48 Mississippi
#5 Alaska	#47 Tennessee

Looking Ahead
“Millions of baby boomers will be facing greater health needs over the next few decades, and this scorecard shows we are still falling short of where we need to be to address those needs,” said Commonwealth Fund President David Blumenthal, M.D. “We need to begin now to make care for elders and people with disabilities more available in homes and communities—where many people prefer to be—instead of in institutions like nursing homes.”

Ideally, all states would have high-performing LTSS systems in which older adults and people with disabilities:

• Can easily find and afford needed services;
• Have choices in both services and providers;
• Have access to quality care to help maintain their quality of life;
• Avoid unnecessary hospitalization and nursing home stays; and
• Receive help from family caregivers, whose needs are addressed and supported.

To view the full report, go to www.longtermscorecard.org.

source: AARP press release June 2017

Illinois"Save Medicaid" Rally was Held on May 6, 2017

May 6, 2017 - Illinois Healthcare advocates and representatives of more than 30 different organizations across the state rallied in front the State of Illinois Thompson Center on Tuesday May 6th to protest the affects the American Health Care Act will have on people with disabilities.

It is estimated that the American Health Care Act, passed earlier this spring by the U.S. House of Representatives, will cut more than $800 billion from Medicaid over the next ten years. This translates to $24 billion in Federal funding for Illinois, which provides nearly 500,000 people with disabilities with the supports that allow them to live independently. In Illinois, Medicaid provides nearly 500,000 people with disabilities with access to support that allows them to live independently. Under the American Health Care Act, “Per capita caps” will devastate Medicaid-funded services that people with disabilities need to live, work and participate in their communities. The American Health Care Act, if passed, will cut more than $800 billion from Medicaid over the next decade. Illinois stands to lose $24 billion in Federal funding. Thousands of people with disabilities will lose access to specialized healthcare services, like nursing, personal care and therapies, according to nonprofit Access Living.

Illinois Representative Greg Harris (13th District), Representative Will Guzzardi ( 39th District), and Representative Theresa Mah (2nd District) attended and spoke at Tuesday’s rally. As of Monday, June 5th rally sponsors included: Access Living, Alliance for Community Services, Anixter Center, The Arc of Illinois, Autism Speaks Illinois, BNICEH, Caring Across Generations, Chicago ADAPT, The Chicagoland Leadership Council, Communities United, Crosspoint Human Services, Ecker Center for Mental Health, Equip for Equality, Everthrive Illinois, Friends Who March, Health and Disability Advocates, Health and Medicine Policy Research Group, Healthcare Rights Coalition, Illinois Network of Centers for Independent Living, IMPRUVE, Indivisible Chicago, IPADD UNITE, Legal Council for Health Justice, Mental Health Summit, Metropolitan Chicago Breast Cancer Task Force, National Multiple Sclerosis Society, Next Steps NFP, Planned Parenthood Illinois, Progress Center for Independent Living, Protect Our Care Illinois [coalition group], Supporting Illinois Brothers and Sisters (S.I.B.S.), Thresholds. 

The Chicago rally was one of seven rallies around the country, organized under the banner, “Don’t Cap My Care.” Thousands of advocates spoke out in support of strong Medicaid services that protect the lives of people with disabilities, keep them out of institutions, and allow them to live independently in integrated communities.

Medicaid Day of Action on June 6th - Nationwide Action Alert!

Many groups around the country have been organizing events to defend health care in America. Now, we’ve all joined forces to declare June 6th a national Day of Action to #SaveMedicaid - and we need YOU to get in on the action. Here’s how you can get involved:

Join a rally.

• If you’re in the DC area, there’s a rally planned for 11:30am. Find out more details here.
  
• Not in DC? Click here to find out about rallies planned in other parts of the country.

If you can’t attend a rally, don’t worry - there are many other ways you can take action that are just as important. We need to get our message across to Congress in as many ways as possible. Here’s what else you can do:

Call your Senators.

You can find your Senators’ contact information by entering your ZIP code at contactingcongress.org. If you find it easier to leave an answering machine message than to talk to a staffer on the phone, you can call after work hours, and your message will still be counted. If you don’t speak, you can call using your AAC device, or get a friend to call in and read your message. No matter how you do it, your call is critical right now. Here’s a script you can use:

My name is [your full name]. I’m a constituent of Senator [Name], and I live in [your town]. I’m calling to ask the Senator to protect Medicaid. Specifically, I want the Senator to promise to vote against any bill that converts Medicaid into a per capita cap, including the potential ACA repeal bill. Per capita caps mean huge cuts to Medicaid that would cause many of your constituents to lose health care, and eliminate vital services that people with disabilities rely on to live in the community. Capping Medicaid will have a devastating impact on the lives of people with disabilities like [me/ my family member/ my friends]. We’re counting on you to do the right thing. Please tell the Senator to stand up for people with disabilities and save Medicaid!

Use the power of social media.

On June 6th, we want to see the #SaveMedicaid hashtag on every social media platform. After you’ve called your Senator, print out a “#SaveMedicaid because…” sign, fill it out & take a selfie with it, and share! Make sure to use the #SaveMedicaid hashtag so we can see it and share it as well. You can also tweet it at your Senators to remind them of your story and encourage others to take action.

No matter how you participate, we need everyone to take action on June 6th. Congress represents us, the people -- and this affects all of us. On June 6th, we’re going to take to the streets, phone lines, social media, and Senators’ offices to tell them to #SaveMedicaid - and we hope you’ll be there with us. United, our message cannot be ignored: Nothing about us without us!

Source: Autistic Self Advocacy Network and so many organizations, and individuals sharing rally's nationwide - TY To ALL!

Illinois Gov. Rauner Budget Puts In-Home Care for Seniors On The Chopping Block

Chicago - On a recent afternoon, 80-year-old John Earl Johnson watched television from the sofa in his Edgewater neighborhood apartment as Reginald Griffin prepared a quick meal of pork and beans with extra sausage — a staple from both their childhoods.

Better Government Association article By: Alejandra Cancino | May 15, 2017                                      
Johnson, a former chef, still loves to cook, but emphysema, diabetes, high-blood pressure and other chronic ailments make caring for himself difficult. He doesn’t want to go into a nursing home, and has been able to forestall that with help from Griffin, who is paid by the state through the $1 billion-a-year Community Care Program.

But the program, created in 1979 under then Republican Gov. Jim Thompson, may be on the verge of a significant overhaul that could reduce in-home help for many, another consequence of the state’s deepening budget crisis. It currently provides in-home help to 84,000 seniors, most of them women.

Most of the seniors served by the program across the state are white, though in the Chicago area most are African-American, according to a 2009 study, the most recent available, prepared for the state Department on Aging.

For more than three decades, Illinois has viewed the program as both a cost-saving and more comforting alternative to nursing home care for low-income residents as they coped with the infirmities of age. But demand for the program has soared as Baby Boomers swell the ranks of the elderly, and the cost-saving initiative itself has become quite costly.

Without changes, Republican Gov. Bruce Rauner’s administration expects program costs to grow an additional $391 million over the next five years. Rauner now wants to scale back services for about 40 percent of those currently assisted by the program, a proposal that is projected to save taxpayers $120 million but is also causing anxiety for largely housebound seniors like Johnson.

The effort comes as elected officials have feuded for nearly two years over passing a budget, an ideological war with plenty of collateral casualties. Among them are agencies hired by the Department on Aging to deliver services under the Community Care Program.

The budget impasse has so far led to a $13 billion backlog in paying bills to state vendors. Of that amount, $230 million is owed to agencies providing home care help for the elderly. The plight of those agencies and the elderly clients they serve will likely be front and center at public hearings on the overhaul proposal hosted by the Department on Aging on Monday in Springfield and Thursday in Chicago.

“This is a mess,” said Robert Thieman, executive director of the Illinois Association of Community Care Program Homecare Providers. “Those that can hold on are holding on the best they can.”

At present, the program serves seniors both enrolled in the federal Medicaid program as well as those with modest incomes that make them ineligible for Medicaid. The Rauner proposal would continue a full range of services for those on Medicaid but transition some 33,000 participants who are not into a separate program with reduced supports. Those impacted are mostly spread out across the state’s south and northwest region and the Chicago area. 

Where seniors most affected by program changes live
DATA FROM ILLINOIS DEPARTMENT ON AGING (see Map) shows the concentration of seniors by Illinois House District who receive services through the Community Care Program and are not enrolled in Medicaid, the public health insurance for low-income people. These are the seniors the state is proposing to transition to a new program in an effort to save $120 million.

Among them is Johnson, who lives in a one-bedroom apartment decorated with photos of days gone by when he stood his full five foot seven inches and didn’t need a cane for support.

Johnson lives on a $1,500 monthly disability pension, enough to keep him technically above the poverty line though he struggles to make ends meet. About a third of his income covers rent and utilities. The rest pays for additional bills, out-of-pocket medical expenses and food.

Griffin, Johnson’s home care aide, now does Johnson’s grocery shopping and laundry, but it’s likely the revised program will no longer pay for such tasks. Instead, the state is proposing to supplant home helpers with vouchers for participants to go out for meals at local restaurants and Uber rides to get there.

And instead of paying Griffin to do the wash, the state would pay a company to do it for Johnson. For some others who live in multi-floor homes, the department said it would pay to move a washer and dryer so it is easier for seniors to do their own laundry.

Such changes have drawn fierce opposition from advocates for seniors who argue that the program works precisely because of its human component. Without assistance, the advocates contend, seniors who otherwise could stay in their homes might end up prematurely in a nursing home—the same costly outcome the state hoped to avoid in setting up the program in the first place.

Lori Hendren, associate director of advocacy and outreach at AARP Illinois, said the state is being shortsighted. She said the Community Care Program costs a monthly average of $859 per senior while nursing home care is more than triple that amount.

The Department on Aging does not believe that the state will see an increase in nursing home admissions because of the new program. It argues that a quarter of the seniors it wants to move to the new program will see no changes in services. The rest will see changes, but under the new program they or their family members will be able to purchase additional benefits.

Jennifer Reif, deputy director of the Department on Aging, said she understands the anxiety and the perception that the new program will cut services. Even so, she said the department was trying to think outside the box to address the growth of the state’s aging population.

“We don’t want anyone to be admitted in a nursing home because resources aren’t in place,” Reif said. But, she added, the state is also trying to be financially responsible.

The Republican administration first unveiled its plan in 2016, but implementation has been slow in the face of strong resistance from Democrats lawmakers as well as interest groups representing seniors. Earlier this year, the Aging department published a proposed framework for the overhaul, but the rules governing it must still be approved by a legislative panel that governs such administrative rulemaking.

Meanwhile, state Sen. Daniel Biss, a Democrat from Evanston who is seeking his party’s nomination for governor in the 2018 elections, recently introduced legislation aimed at blocking Rauner’s plan. Lawmakers passed similar legislation in 2016, but it was vetoed by Rauner.

“We have a moral obligation to provide care for those who have been here the longest; to provide care for people who want to live in their homes” Biss said at a recent press conference in Springfield.

Other Democrats in Springfield acknowledge the gravity of the state’s budget crisis, but argue that the solution should not be to make cuts at the expense of vulnerable seniors.

“If we make changes and they result in more seniors going to the nursing home, then we are doing the opposite of what we were supposed to do,” said Anna Moeller, a Democrat from Elgin and chair of the House Aging committee.

State Sen. Dale Righter, a Republican from Mattoon, said the bottom line is that while the Community Care Program provides good services, it is “inefficient in the way it operates.” The difference, he said, is that the new program will target services to better tailor seniors’ needs. “And that’s how we save the projected $120 million.”

Budget fights to fund the program aren’t new. Over the years, advocates for seniors have pushed to expand the program’s reach and increase services for seniors who need it the most. Elected officials have balanced those wishes with the program’s increasing cost.

Under Thompson’s administration, the Aging department managed to obtain federal financial assistance to underwrite a portion of services offered to Medicaid recipients. Currently, that federal money covers $200 million of the overall cost.

Jean Blaser, a former Department on Aging official who long oversaw the program, said its launch years ago placed Illinois at the forefront of a nationwide shift away from the institutionalization of older adults. At the time, Blaser recalled, the state decided not to make a distinction between low income seniors on Medicaid and those who were not because older adults often cycled on an and off the federal health insurance program.

“At some point you have to say: Look, this is the decent thing to do,” Blaser said.

http://www.bettergov.org/news/can-ailing-illinois-afford-in-home-care-program-for-seniors
LEAD PHOTO: Jose More

For more from the Better Government Association, visit: www.bettergov.org/

Illinois Caregivers Might Earn Higher Wage After Bill Passes State Senate, Headed To House

May 15, 2017 - The Illinois Senate on Wednesday passed SB955, a bill that would raise wages to $15 an hour for caregivers of people with disabilities, end a staffing crisis at organizations across the state and safeguard the future of the state’s most vulnerable residents. After Wednesday’s action in the Senate, the bill will move to the House with a May 31 deadline for passage.

“We urgently ask the House and Gov. Bruce Rauner to make this essential bill a law,” said Kim Zoeller, president and CEO of Ray Graham Association, which serves adults and children with disabilities. “If we don’t pay caregivers a living wage, we’re turning our backs not only on them, but on thousands of people with disabilities and their family members who rely on this life-sustaining care.”

Across Illinois, hundreds of agencies that serve people with disabilities are facing an escalating crisis because wages paid to caregivers – known as direct support professionals (DSPs) – stalled nine years ago at $9 an hour, one of the lowest rates paid by any state in the nation and one that puts many caregivers below the federal poverty line. Low wages have led to critically low levels of staffing that advocates say are endangering the safety of people with disabilities.

After the General Assembly last year passed a bill to raise wages to $15 an hour, the governor vetoed it, arguing that caregiver wages should be addressed as part of a comprehensive state budget. However, Rauner’s FY18 budget introduced in February included no such increase.

As a consequence of the chronically low funding, a federal court monitor issued a report in January saying that Illinois is now violating a federal decree issued in 2011 after civil rights attorneys sued the state for failing to comply with a 1999 U.S. Supreme Court ruling. At a hearing on the matter last week, the state asked for more time in responding to the latest motion, but attorneys for people with disabilities replied that such delays were unacceptable and that the Illinois disability service system is now “on the brink of disaster.”

Article by The Chicago Crusader Newspaper | May 15, 2017

Seniors and Disabled Medicaid Standards of Care Improvements Delayed to 2022

The Trump administration has given states three extra years to carry out plans for helping elderly and disabled people receive Medicaid services without being forced to go into nursing homes.

Associated Press article by Phil Galewitz | May 11, 2017                                                                        
Federal standards requiring states find ways of delivering care to Medicaid enrollees in home and community-based settings will take effect in 2022 instead of 2019, the Centers for Medicare & Medicaid Services announced this week.

The standards were set by an Obama administration rule adopted in 2014 that governs where more than 3 million Medicaid enrollees get care.

Among other things, the rule requires states to provide opportunities for enrollees to engage in community life, control their own money and seek employment in competitive settings. It also ensures that enrollees in group homes and other residential settings get more privacy and housing choices that include places where non-disabled people live.

Matt Salo, executive director of the National Association of Medicaid Directors, applauded the delay.

“We have long been on record saying that the regulation was hopelessly unrealistic in its time frame,” he said. “Delaying it actually helps consumers because the underlying regulation was going to push too many changes too fast into a system that wasn’t ready.”

The Obama administration’s 2014 rule was an effort to create a federal standard to improve the quality of care that the disabled receive outside institutions.

Some states had tried — and struggled — to make changes on their own, partly due to a lack of funding and political difficulties of changing deeply entrenched relationships with providers.

Some had, for instance, forced providers to change long-standing operations at group homes and so-called sheltered workshops, such as Goodwill Industries, where disabled people often work apart from other employees, performing menial tasks for less than minimum wage.

Helping disabled people find work in places where they are not segregated costs states more money, said Gary Blumenthal, CEO of the Association of Developmental Disabilities Providers.

The delay in implementing the federal rule is “a victory for the status quo and for states reluctant to embrace the [new standards],” he said.

States spent several years fighting the new rules during the Obama administration and that slowed their planning, said Elizabeth Priaulx, senior legal specialist with the National Disability Rights Network. She noted states were under pressure from nursing homes and for-profit group homes to resist the changes.

“It is unfortunate the delay had to occur,” but many states were not ready, she said.

The new rule also directs states and providers to reconfigure existing community settings such as group homes to ensure that people will have more privacy. “Without these dollars it’s difficult to change the system,” Blumenthal said.

Funds Already Shifting
In 2014, state Medicaid programs for the first time spent more on long-term care in home and community-based settings than on nursing homes. But there was great variation: Mississippi spent about 25 percent of its long-term care dollars on home and community care while Oregon and other states spent nearly 80 percent.

Camille Dobson, deputy executive director of the National Association of States United for Aging and Disability, said the delay was important for states worried about losing federal funding if they didn’t meet the new standards.

“It was very likely that most of the states would not have been in compliance by March 2019 and so CMS would [have been] faced with taking money away from programs that help people stay in their homes rather than go to nursing facilities,” Dobson said.

The administration’s announcement of the delay came less than a week after the House passed the American Health Care Act, which would take $880 billion over 10 years out of the Medicaid program. It was expected after Health and Human Services Secretary Tom Price in March invited states to apply for waivers from federal Medicaid rules that he said were too onerous to help improve the program.

So far, Tennessee is the only state that has received final approval from CMS for its implementation plan. States still face a 2019 deadline to gain approval for their implementation plans.

Kathy Carmody, CEO of The Institute on Public Policy for People with Disabilities in Illinois, said there is concern the Trump administration may not just delay the rule’s implementation, but eventually eliminate it altogether.

“We are disappointed,” she said, noting that Illinois ranks last or near last on several measures of care for people receiving home and community-based services. That includes having about half of its disabled Medicaid enrollees in residential care settings with seven or eight other disabled people and less than 6 percent of its disabled enrollees in competitive employment, she said.

“We were really hoping the rule would be a push from the federal government to help us evolve into the 21st century and get out of the mid-1980s where we are stuck,” Carmody said.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation. KHN’s coverage of aging and long-term care issues is supported by The SCAN Foundation.