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Slowik: Budget impasse threatens state commitment to mental health care

The SouthtownStar - 4/14/2017

April 13--Back in 1972, Geraldo Rivera -- then a young investigative TV journalist -- reported on shocking conditions at a state-supported facility for children with mental disabilities in Staten Island, N.Y.

A doctor caring for children at the Willowbrook State School invited Rivera and a camera crew into the facility, unannounced and unbeknownst to administrators. Conditions were horrific.

"There was one attendant for perhaps 50 severely and profoundly retarded children, lying on the floor naked and smeared with their own feces. They were making a pitiful sound, a mournful wail that is impossible for me to forget," Rivera reported.

"It smelled of filth, it smelled of disease and it smelled of death," Rivera said.

The public outcry resulting from Rivera's investigation ultimately led to the facility's closure in 1987 and brought about federal civil rights legislation protecting people with disabilities.

Americans realized they had to do better. Strategies to provide care for people with mental and developmental disabilities shifted from larger institutions to smaller, more personalized settings, often home-based.

I reflected this week on the progress we as a nation have made in the past 45 years regarding care for people with developmental disabilities. Here in Illinois, I'm becoming increasingly concerned by how the nearly two-year budget impasse is impacting delivery of social services.

I worry state leaders are wavering in their commitment to support people who need assistance over the long term and that progress we have made in mental health care is in jeopardy.

Make no mistake: It is expensive to care for people with the most profound mental, physical and developmental disabilities. Many require 24-hour care and need help to eat, bathe, dress and perform other routine functions.

Art Dykstra has been executive director of New Lenox-based Trinity Services since 1987. He came to Trinity after a 20-year career with the Illinois Department of Mental Health and Developmental Disabilities.

With 50 years experience, Dykstra is among the most knowledgeable professionals about mental health care in Illinois. He often speaks at conferences and has co-authored a book about organizational leadership.

Last week, Dykstra testified before a joint hearing of the Illinois House Human Services, Special Needs Services and Appropriations committees to draw legislators' attention to issues Trinity Services and other providers are facing because of a lack of appropriate state funding.

"What's happening today is that current capable providers are refusing to serve these individuals anymore," Dykstra testified at the hearing. "Inexperienced providers are trying to serve them and I'll tell you, in my opinion, they're failing."

Trinity Services has an annual budget of more than $50 million, serves more than 3,500 people a year at 31 different communities in Illinois and employs more than 1,200 people.

I spoke by phone this week with Dykstra about an April 7 announcement that as of July 1, Trinity Services would "continue the mission" of Lamb's Fold, a Joliet-based agency that helps "homeless or abused women and children work toward self-sufficiency."

"It's tough for a smaller organization to survive," Dykstra told me. "It's hard because of the state's funding situation."

Gaps in funding because of legislators' inability to pass a full operating budget since July 2015 have left Lamb's Fold on uncertain financial footing, Trinity said in its announcement.

The funding situation is straining the ability of providers to adequately staff group homes and other facilities, Dykstra testified before legislators last week. Numerous wrongful-death lawsuits allege providers are at fault for inadequately supervising people receiving care.

A three-part Chicago Tribune investigation published in November found at least 42 deaths linked to abuse or neglect in group homes over the past seven years. More than 11,400 people are cared for in more than 3,000 group homes of eight or fewer adults known as Community Integrated Living Arrangements, the Tribune found.

Group homes are a more cost-effective option than institutions, the Tribune reported. The annual cost of care for an institutionalized resident is about $219,000 compared with $84,000 at a group home, according to state records.

But Illinois has not increased reimbursement rates for group home staff wages in nine years, creating a "staffing crisis," the Tribune found. Caregivers in group homes earn an average of $9.35 an hour, according to the Illinois Association of Rehabilitation Facilities.

Dykstra is outspoken about the need for increased state funding and a resolution to the budget stalemate.

"Thank God our people are willing to work overtime," he told me. "In many instances there should be two people on duty and there's only one. This isn't a situation where providers are crying wolf. The government needs to do something, now."

Dykstra told me that when providers are sued for negligence, the state should bear some of the liability because of its failure to pay agencies serving people with disabilities. He said that's one of the messages he delivered to legislators during his testimony last week.

"I said to them, 'Help me understand why you don't own the duty of care," Dykstra said.

Illinois has a huge backlog of bills because of its multi-billion dollar budget deficit. Legislators and Gov. Bruce Rauner have been unable to agree on tax hikes or other revenue increases, or cuts in services or reforms that would reduce expenditures.

Court orders and stopgap funding measures mean state workers continue to be paid and K-12 public schools are funded. Social service providers and higher education are among those most impacted by the impasse. Providers face long delays in receiving reimbursement from the state for services already provided by agencies like Trinity.

Trinity Services was founded in 1950 and receives funding from the Illinois Department of Human Services, the Illinois Department of Healthcare and Family Services, United Way and tuition reimbursement from local school districts.

Lamb's Fold was founded in 1985 to provide housing and other services to women and children. The organization says on its website it relies on private donations for funding, though Dykstra said it also receives funds through the U.S. Department of Housing and Urban Development.

Lamb's Fold and Trinity Services have had a partnership since 2003, with Trinity providing case management services for Lamb's Fold clients. Last week's announcement reflects agreements by the boards of both organizations for Trinity Services to take over as recipient of grant funding for Lamb's Fold, Dykstra said.

tslowik@tribpub.com

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(c)2017 The Daily Southtown (Tinley Park, Ill.)

Visit The Daily Southtown (Tinley Park, Ill.) at www.chicagotribune.com/suburbs/daily-southtown

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