Tony’s Picks for 2016

2016 was a year of surprises and challenges for disability advocates. So here are my picks of the Top Ten Disability Issues for 2016!

TRUMP ELECTION. No doubt the election of Donald Trump is the number one story of 2016. A businessman with no political experience is about to become our President. His platform and his public comments call for block granting Medicaid, our lifeline for community services, repealing the Affordable Care Act, (Obama Care) a critical protection for people with disabilities and eliminating sub minimum wages. The Arc also expect attacks on children’s SSI, I.D.E.A, and the American’s with Disabilities Act. Lastly, conservative appointments to the Supreme Court will make it extremely necessary for disability advocates to step up before we witness the dismantling of disability services across the nation! Join The Arc’s Disability Advocacy Network and be ready to respond on a moments notice.

NO STATE BUDGET. No state budget or new revenue for 2016 continues to trouble disability and human services in Illinois. It is estimated there is now a backlog of $11 billion in bills! In addition, on December 31st, the state’s spending authority for the stopgap budget ended setting up financial crisis once again. Budget talks have broken down and our best hope might be another stopgap budget for the next six months through June, 2017.

NEW EXECUTIVE DIRECTOR. Meg Cooch was selected by The Arc Board of Director’s to be the next Executive Director of The Arc of Illinois! Meg will begin her duties on Monday, January 30, 2017. She was member of The Arc of Illinois Board of Directors and chaired the Public Policy Committee. Her most recent position was the Executive Director of the Illinois State Alliance of YMCA’s. Meg has a long history of advocacy and grass roots organizing, as well as a deep knowledge of the issues facing people with disabilities and a passion for social justice.  Her qualifications include a Master in Public Policy with a concentration in health policy – from Harvard University. Welcome to The Arc Meg!

LIGAS NONCOMPLIANCE. In early 2016 the Ligas Court found the State to be in noncompliance with the Ligas Consent Decree, “Despite the Defendants’ (the state) ongoing commitment to compliance with the Decree, Mr. Records noted in his Third Annual Report that “resources for implementation, however, are significantly strained” and that there were “several concerns identified, which, if not effectively addressed, could result in non-compliance”. The current Monitor’s experience in Fiscal Year 2016 thus far is that the status of such resources has significantly worsened. In the current report, there is a finding of noncompliance in this area.” The Monitor’s first six months have been focused upon several major and interrelated issues which directly impact the Consent Decree’s implementation, including:

•             Lack of a budget for the State of Illinois resulting in uncertainties for beneficiaries of the Consent Decree and their families, agencies, staff, providers of all types of services, and advocates;
•             Low wages creating a staffing crisis for providers of all types of services in their efforts to recruit and maintain adequate staffing and appropriate training for staff with existing inadequate funding for wages and high staff turnover levels;
•             Initiation of waiver services still pending for more than one year, and for as much as three or more years, for 153 class members who have been selected between March, 2012 and March, 2014 via the PUNS process as well as for 101 Ligas ICFDD class members seeking DD Waiver services;
•             Limited availability of small CILAs in certain geographic areas and for individuals with more intense medical, behavioral or physical needs;
•             Inadequate availability of flexible, person-centered, integrated day activities or employment for individuals seeking such opportunities;
•             Reported potential for inadequate availability of resources or implementation of the Consent Decree during the second half of Fiscal Year 2016.

The Monitor has already stated she will find noncompliance in the next report to the court which will be released in January, the only question I have is will noncompliance findings be expanded.

The Court Monitor will be a featured speaker at The Arc’s Annual Leadership Conference where she will review the Fifth Annual Report for attendee’s, February 2-3, 2017, Hilton Lisle.

SUFFERING IN SILENCE. The Tribune investigative series focusing on abuse and neglect in community programs rocked the disability community in 2016. Calling for greater transparency from the Dept. of Human Services and the troubling performance of Disability Services of Illinois, a notorious community provider, prompted a joint hearing of the Senate and House Human Services Committee. Two Tribune editorials and three stories have been published in 2016 and more are expected in 2017.

DSP RETENTION CRISIS. The ability of community providers to recruit and retain direct support professionals has reached crisis levels here in Illinois with vacancy rates are exceeding 30%! The DSP crisis threatens the health and safety of individuals in community services. The Value the Work Coalition in 2016 introduced legislation which would increase starting wages for DSP’s to $15.00 per hour which passed both the Senate and the House only to be vetoed by Governor Rauner. Override attempts in the fall failed in the House. The Coalition intends to reintroduce the legislation in 2017.

CONTINUUM OF CARE.  Illinois remains one of the most institutional states in the nation yet the Continuum of Care legislation passed the House, Senate and was signed into law by the Governor. This legislation creates a new license for one provider in the state exempting that provider from important community integration rules and putting the state at risk of losing $12 million in federal funding. The Arc will continue to oppose implementation of this legislation in 2017.

NO INSTITUTIONAL CLOSURES. Illinois continues to fully fund and operate seven state institutions at a cost of $258,000 per person. For decades The Arc of Illinois has called for the closing of costly, antiquated state institutions. In Illinois we spend about $430 million to segregate 1,600 individuals with intellectual disabilities in state institutions. Compare that to the $370 million to support over 7,000 individuals in community group homes where people live healthier and safer. Illinois can no longer continue to fund community and state institutions. The Arc will continue to call for the closing of six of the seven state institutions and to reinvest those resources into the community.

WAITING LIST & NEW SERVICES.  About 19,000 children and adults with intellectual and other developmental disabilities remain on the PUNS waiting list. Because of the Ligas Consent Decree 500 adults move off the waiting list each year. 85% of the individuals moving off the waiting list are choosing home-based services rather than CILA (group homes) or other traditional community services. Individuals and families are looking for and creating new supports outside the traditional disability system forcing the disability system to reevaluate its funding of legacy services here in Illinois.

TAP & LIFE SPAN FUNDED. The stopgap budget refunded The Autism Program and Life Span in 2016. Both programs are rebooting their vital advocacy resources for individuals and families statewide as one of the few sparks of hope in the state budget battle in 2016.

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Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
708-828-0188 (CELL)