Frequently Asked Questions – March 2012
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 the
individual and their guardians every step of the way utilizing a person-centered approach. This
could well be a national model for institutional closures.
Transitioning people with developmental and intellectual disabilities out of institutions into the
community is a process that offers opportunity, inclusion and choices for individuals and families.
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.
What is the overall goal of the Active Community Care Transition plan?
The plan offers people with disabilities a personalized and individualized approach to living in a
community setting close to family and friends. The transition from an institution to community care
offers people an improved quality of life with the freedoms, opportunities and support not present
in an institution. 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.
What is an Independent Person-Centered approach?
It is a detailed planning process that includes the individual and their support system to identify
their needs and desires to develop and coordinate a successful move into community living. This
Person-Centered approach incorporates family and guardian input as well as formal monitoring of
the transition and long-term care. Each plan is customized with safety and quality of life as the top
priorities.
What are community based disability services?
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.
LIVING IN THE COMMUNITY
Can everyone with a disability thrive in a community setting?
It is possible that just about everyone can make a safe and meaningful transition into community
living. Former residents at Lincoln, Howe and other state institutions are living with an improved
quality of life, safely and happily in their communities. Even people that require 24-hour care and
support, 365 days a year, can live in the community.
Why is an individual transition plan important?
Just like the population at large, people with cognitive and other developmental disabilities have
varying challenges and gifts. Everyone can be supported in the community as long as they have the
necessary supports and staff. The process that has been put in place allows for a comprehensive
plan created by a professional team including families to assess what exactly each person in
transition needs. This team will determine the place where that person will live, including people
who pose a threat to themselves or others. In addition, the current safety net will be improved and
expanded.
Is community living a “one size fits all” approach?
Unlike institutional living, all community living plans are customized based on individual needs.
Community supports, including trained staff, are designed to allow people with unique and severe
disabilities the ability to flourish in a community setting. 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. In addition, everyone
leaving an institution is assigned a service coordinator to advocate, monitor and assist in carrying
out his or her plan.
What types of programs are considered community-based services?
Community-based disability services are any of the multitudes of support needed by people with
disabilities to be successful in their daily lives. Those supports may include help with the everyday
needs of life such as eating, bathing, grooming, and dressing. They may help with medications and
therapies. They may help with developing skills for overcoming communication or behavioral
challenges. They may help with learning social skills or offering support for work opportunities.
They also provide support and respite to caregivers of children and adults with disabilities so that
they can be the resource their loved ones need them to be.
How does community-based services compare to institutions?
Community based disability services help children and adults live with independence, dignity and
equality close to family and friends, and they are able to participate in all the opportunities
community offers. Community living provides safer, more effective and healthier environments for
people with disabilities to live.
Is there evidence documenting the advantages of community living vs. institutions?
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. Persons with
disabilities thrive in community-based settings, which are much more cost effective.
What is a Community Integrated Living Arrangement (CILA)?
It is a neighborhood home that consists of two but not more than four individuals. The home can be
an apartment, townhome or similar location. Depending on the severity of the disability, there may
be a caregiver living on-site to offer 24-hour supervision and care.
MAKING THE TRANSITION
What resources are available to help families and guardians?
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. People
going through the transition are not alone and The Arc, along with other advocates, will be there
every step of the way to offer support and guidance through the process. The Arc has 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.
This can be a scary process. What are parents and guardians saying after their loved ones
made the transition into community living?
Research shows that family member attitudes change dramatically after community placement.
Before community placement, less than 20% of families agreed with community living and 58%
strongly opposed community placement; however, after placement, 66% of families strongly agreed
with community placement and less than 5% opposed.
Who will manage the overall transition process?
The Illinois Department of Human Service will oversee the Active Community Care Transition
(ACCT) Plan. Community Research Associates (CRA) is a training and management-consulting firm
that was enlisted by the State of Illinois to develop, oversee and implement the ACCT Plan. Founded
in 1982, CRA has provided training and consultation in all 50 states and is widely known for having
incorporated person-centered planning into all of their service designs and delivery efforts. CRA
has been extensively involved in transitioning individuals, including those with significant
behavioral, psychiatric, intellectual/developmental and physical disabilities from institutions. CRA
will coordinate its efforts with disability advocates and stakeholders.
Is there evidence that moving away from an institution and into a small community home is
successful? Are outcomes for people better in the community?
Research demonstrates that moving people from institutions to the community has been extremely
successful and that outcomes for people in the community are better than those individuals
segregated in institutions. Recent research has also found this to be true of people with very serious
challenges. Approximately half of those currently living in a community setting came from an
institution or nursing home.
How will this process be monitored?
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 access the
individual’s progress, make sure that their needs are being met, and that they are happy with the
success of the transition. In addition, CRA and Illinois DHS will create a website to monitor the
ongoing transition process for the individuals as well as providers. Additionally, The Arc of Illinois
will be a support as long as the family or guardian wants assistance.
Are people in institutions more disabled than people living in the community?
People in institutions have a variety of disabilities, some with extensive support needs; however,
there are many people who carry the label of having severe disabilities that are enjoying life in a
community setting. There was a time when institutionalization was thought to be the only option.
Nationally, there are now 14 states without any state institutions.
What is the timeline for the transition?
In 2012 Governor Quinn announced the closures of the Jacksonville Developmental Center, as well
as Warren G. Murray Development Center.
Approximately 600 people with disabilities are
expected to be transitioned into community living by Fiscal Year 2014. Even with these closures,
four state institutions will remain open.
COMMUNIY LIVING IS THE RIGHT THING FOR ILLINOIS
How great is the need for community-based services?
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.
How does Illinois compare to other states in funding community programs?
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.
What is the cost of community based services compared to institutional costs?
The state pays $192,000 per person in an institution versus approximately $50,000 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.
The Arc of Illinois represents more than 220,000 people with disabilities and their families. The
Arc is committed to empowering persons with disabilities to achieve full participation in
community life through informed choices. For more information contact: Tony Paulauski at 815464-1832 or tony@thearcofil.org.
SOURCE: The Arc of Illinois, March 2012