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Going Home – A Full Life in the Community

Going Home Illinois

COMMUNIY LIVING IS THE RIGHT THING FOR ILLINOIS The Governor has developed a Rebalancing Initiative bringing in national experts to assist individuals and their guardians to make a safe and secure move to community living. The approach is very different from past state institutional closings because it requires the full participation of individuals and their guardians every step of the way utilizing a person-centered approach. This could well be a national model for institutional closures.

The “Prioritization of Urgency of Need for Services” (PUNS) database maintained by the Illinois Division of Developmental Disabilities shows almost 21,000 people actively in need of services. That’s 21,000 children and adults and their families living lives of frustration, isolation, and exhaustion because these programs are grossly underfunded. There are currently 40,000 children and adults receiving state funded community-based disability services and 220,000 infants, children and adults with developmental disabilities in Illinois.

Illinois ranks 51st in the nation for supporting citizens with developmental disabilities in their home communities.   There are 14 states that have already phased out state institutions that have proven to be an antiquated way of caring for people with disabilities.  Illinois’ neighboring state of Indiana closed its last remaining institution in 2011.

Persons with disabilities thrive in community-based settings, which are much more cost effective.

  • Illinois pays $192,000 per person in an institution versus approximately $52,000 per person for community based disability services.
  • Nearly four people can be served with community-based services for every one person in an institution.
  • Moving people to the community is not an issue of cost; it is an issue of human and civil rights.   All people, regardless of the severity of their disability, are entitled to community living.

Active Community Care Transition Plan

In 2012 Governor Quinn introduced the Rebalancing Initiative that included the Active Community Care Transition (ACCT) Plan and announced the closures of the Jacksonville Developmental Center, as well as Warren G. Murray Developmental Center.  Approximately 600 people with disabilities are expected to transition into community living by fiscal year 2014.  Even with these closures, four state institutions will remain open for about 1,300 individuals.

The Illinois Department of Human Service will oversee the Active Community Care Transition (ACCT) Plan and has enlisted Community Research Associates (CRA), a training and management consulting firm to develop, oversee and implement the ACCT Plan.

The ACCT plan offers people with disabilities a personalized and individualized approach to living in a community setting close to family and friends.  Each transition plan utilizes an Independent Person-Centered approach that is customized so families and individuals have control over the planning process and most of all, their own lives.

Everyone who leaves an institution does so only after thorough individualized team planning that includes the person and their guardian and after all needed community-based services and supports are identified.

 

Each individual that transitions will have an Individual Service Coordinator (ISC) who will serve as the person’s advocate in the community. The ISC will meet at least monthly to assess the individual’s progress, make sure that their needs are being met, and that they are happy with the success of the transition.

 MAKING THE TRANSITION INTO THE COMMUNITY

The Illinois Developmental Disability System has been studied many times and the overwhelming opinion is to downsize state institutions and to invest more in a community system.

Research shows that family member attitudes change dramatically after community placement.  Studies surveyed parents before and after their family member moved to a community setting from an institution.

  • Before community placement, only 15% of families agreed with community living; however, after placement, 87% of families agreed with community living.
  • After the transition, more than 65% of parents reported that their family member was happier and that relationships between them and their son or daughter improved.

Everyone can make a safe and meaningful transition into community living. Former residents of Lincoln, Howe and other state institutions are living with an improved quality of life, safely and happily in their communities.

Approximately half of those currently living in community homes came from an institution or a nursing home. They are now proud, happy and productive members of their communities and proof that it can be done.

Community-based disability services support people with significant disabilities in the communities of their choice allowing them to live with family, on their own, or in a residential setting and offers the opportunity to live full and vibrant lives that maximize independence and full inclusion.

Community-based disability services are supports needed by people with disabilities to be successful in their daily lives.  Trained staff assist people with unique and severe disabilities and offers them the ability to flourish in a community setting.   Supports offered include:

  • Help with the everyday needs of life such as eating, bathing, grooming, and dressing.
  • Help with medications and therapies.
  • Help with developing skills for overcoming communication or behavioral challenges.
  • Help with learning social skills or offering support for work opportunities.
  • Respite to caregivers of children and adults with disabilities so that they can be the resource their loved ones need them to be.

Depending on the severity of the disability, there may be a caregiver living on-site to offer 24-hour supervision and care 365 days a year.

The Illinois Department of Human Services included disability advocates, like The Arc of Illinois, early in the process to help develop a well thought out and comprehensive transition plan. The Arc of Illinois launched the Family Transition Project that connects family members who have gone through the transition to offer support to those that are just beginning their journey. 

In partnership with the Illinois Council on Developmental Disabilities, The Arc is committed to empowering persons with disabilities to achieve full participation in community life through informed choices. The Arc of Illinois represents more than 220,000 people with disabilities and their families. For more information contact: Tony Paulauski at 815- 464-1832 or tony@thearcofil.org.                                                              

SOURCE: The Arc of Illinois, March 2012

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