1
Chicago Jewish Community Supported Community Living Initiative
Vision Statement and Action Plan
December 2012
Over the past 18 months, members of the Chicago Jewish Community have come together to dream about creating a model of supported community living for people with
intellectual/developmental disabilities (IDD). What has been found over this time period is that the community is hungry to address the needs of adults and young adults aging out of their school years in ways that are inclusive, sustainable and within a Jewish context. From ten initial participants, the ranks have grown to several hundred families expressing a need for services and supports. More than 75 of them have engaged actively in committee work intended to turn this dream into reality.
Today’s young adult with intellectual disabilities has grown up expecting to participate in his/her community and neither they nor their family want that participation to end now that they have reached adulthood. What is also true is that the existing funding environment and pending implementation of health care reform add further complexity to the development of a sustainable model, one that allows adults with IDD to have a self-selected living arrangement and a
sustainable high quality of life within a Jewish environment.
But the complexity of the environment cannot be used as an excuse. We may not be able to do all at once, all that we dream, but we can do that which is possible. At the core of the consultant’s recommendations are the following:
A deep respect for, honoring and promoting of self-determination by individuals with disabilities in whatever means available,
The need to look beyond traditional methods/models of service,
The need for community supports and services tailored to the individual, and
Full collaboration among the Chicago-area Jewish communal service providers is essential to maximize limited resources.
The following Guiding Principles have been developed:
1. Provide a “whole-life” solution that addresses all aspects of successful living. 2. Support individuals across the spectrum of I/DD and level of support needs.
3. Services and programs will be person-centered, giving individuals and their families the lead voice in designing their care and supports.
4. Programs and services will be community-based, and will adopt “best practices” as appropriate for the services offered. (New programs will be developed only when there are no appropriate existing services following these guidelines available to meet expressed need.)
2
5. Staff in each of the programs and services will be of the highest quality and integrity, and will be supported through ongoing training and professional development programs that promote continuity of service.
6. Support individuals across all socio-economic levels and all levels of religious observance.
7. Solutions must be financially sustainable.
Current Project Status
“Life is what happens while you’re busy making other plans.” John Lennon
The project to date could be described as “slow and steady wins the race.” Though the level of urgency for services needed by individual families varies widely, overall we have been deliberate in moving forward, recognizing the significant depth of commitment required by participating agencies once programs are implemented.
However, even as our long-awaited consultant’s report is being finalized, the State of Illinois has created a new level of urgency by sending funding letters to a number of our participating
families as a result of the Ligas lawsuit settlement. In many cases, there is a six-month window for the individual/family to express their intent to utilize funding and work toward activation of services before the funding offer is withdrawn. This is great news for our families. Had these letters gone out two years ago, there would have been no Jewish community to approach for service. Now, all of our discussions and footwork have created a solid starting point for a Jewish Community response.
What is the key element that highlights the unique nature of this project? First and foremost, it is driven by a large group of Jewish community members, in partnership with numerous Jewish communal service providers and the Jewish Federation. Together, this large and growing group of consumers has recognized a long unmet community need, and have organized collaboratively to develop a comprehensive and sustainable solution.
Proposed Program Model: Clustered Communities
As defined by participating community members, the preferred community response is to establish “Cluster” communities based around the Jewish Community Centers in West Rogers Park, Skokie and Northbrook/Highland Park. The JCCs will serve as the geographic and social center around which housing options will be realized based on individual preferences and needs. Clusters will facilitate a wide variety of recreational activities and religious celebrations. The potential exists to significantly broaden socialization among adults with developmental
disabilities, irrespective of their living arrangements, and at the same time strengthen the links between them, their local Jewish community, and the broader community. The desired result will be a number of vibrant, dynamic cluster communities in which members thrive and grow beyond the limits of their particular circumstance, embedded within already thriving Jewish communities with strong institutional roots. In this way, all participants will benefit from a stronger, more supportive, and hopefully more joyous sense of community.
3
Using West Rogers Park as an example, a Cluster is already forming around the Horwich JCC with existing CILAs operated by Libenu Foundation and JCFS. Given that infrastructure is put in place to provide the broad range of supportive services needed, the Cluster can grow organically, including support for individuals choosing to remain in their family homes, living in CILAs operated by other providers, or living independently.
A key strength of the model is each individual’s ability to access the specific mix of services meeting their goals. Based on the expressed interests of an individual and family, interviews and assessment with the Service Facilitation staff or referral from other qualified professionals, an individual’s initial point of access could be anywhere from participation in social activities to supported employment, from occasional support hours to 24/7 supported living.
Following are the key components of a comprehensive Supported Community Living Initiative:
Housing. Though all aspects of life must be addressed in the successful model, housing consistently rises to the top as the key element for many of our families. Each Cluster is envisioned to include:
A mix of single-family homes and apartments/condos in multi-unit buildings o Choices for residential supports might range from:
Supported Living with 1 or 2 others
Small group homes living with up to 3 others for those who require 24-hour supports (CILAs)
In home supports for people who may still be living at home with their families or who have their own apartment
Potential other models include shared living as well as intergenerational living arrangements
Varying designs based on individually determined service intensity needs and individual/family preference.
Non-Agency owned or controlled housing is envisioned, where an Agency provides services in homes leased or owned by the occupants or their families.
Where suitable financial arrangements can be made, ownership may be held by a 3rd party not-for-profit such as JFMC-related Facilities Corporation (FacCorp)
Sample templates will be developed describing varying living options with accompanying costs
Service Facilitation/Family Support. Professional support for participating individuals and their families, including facilitating person-centered planning, information and referral, case management, promotion of self-advocacy, and client-focused advocacy. Given that an important aspect of program sustainability is the engagement and encouragement of “next generation guardians”, it is essential that professionals, participants, and families partner together to enrich the experience for all.
4
Meaningful Day Services and Supports per person-centered planning, including: Creative programming that allows for a meaningful day for those who, for whatever
reason, are unable to enter the competitive workforce. These options for individual choice might include but are not limited to meaningful volunteer activities and/or participating in a variety of hobbies, increasing social skills, and accessing community recreation and leisure resources with staff and volunteer support.
Independent living skills training such as using of public transportation, meal planning and cooking and health and safety training based on the needs of participants.
Health and safety training based on needs of participant including but not limited too daily living skills, self-care, transportation.
Vocational Assessment, job training and Supported employment and/or individualized micro industry options for those who are ready to earn a living and be as self-supporting as possible.
As appropriate, Jewish religious, cultural, and social experiences tailored to the traditions and preferences of the participant making maximum use of the resources available within the community such as JCC, organizational, synagogue, and age-appropriate Hebrew school programming.
Opportunities to engage in guided, sustainable way with the broader community enhancing general community support and commitment to the cluster.
Home-based services. Based upon person-centered planning, an individual support plan would be developed encompassing a full array of services that may be required for an individual to remain in their own home.
Recreation and Socialization. Encompasses a broad range of individual and group activities, including health and wellness, social clubs, special events, and competitive sports.
Caregiver Supports. Developed to provide training, opportunities for families to get together, and services to ensure the safety of the family member with a disability allowing for other caregiver pursuits.
Jewish Communal Service Providers Currently in Place
Service providers are in place on numerous aspects of this plan, though specific needs based on person-centered planning results are still to be determined and will need to be developed or purchased in many areas.
Housing: Libenu Foundation and JCFS currently operate group homes with CILA funding within the Jewish community and are positioned for growth. Numerous other reputable licensed providers operate in our targeted service areas.
Service Facilitation: JCFS is an authorized Service Facilitation provider. Also offering case management, community education events and the Disability Helpline.
5
Meaningful Day Services: Keshet is well positioned to serve as the primary day
programming provider, and has already existing partnerships with the JCC in both WRP and Northbrook that can be expanded based on SCLI program needs. Their Adult Day program Gadol provides meaningful day activities and is community based, with expansion plans underway. Keshet/Gadol provides day programming that includes meaningful employment. JVS offers job placement assistance, job readiness training, job training and support, supported employment and job training services.
Home/Community-Based Services: JCFS offers home/community-based support services, which may be covered under the Home-Based Waiver program.
Recreation and Socialization: JCFS offers Family Commons inclusive recreation, Yad b’ Yad and psycho-educational groups. Keshet offers recreational programs. A key component going forward will be continued and expanded JCC participation. Proposed Governance Structure
It has been proposed that JCFS serve as the lead Agency for this initiative. The scope of that authority has not been determined at this writing. Community members, while recognizing that it would not be in its best interests to form a new organization, still want to ensure ongoing input and some span of control by families, siblings, and guardians of residents over the programs and services being developed and provided. Long-term success for this initiative requires the ongoing ownership and support of the participating families, participating providers and the broader Jewish community. Fully defining the nature of these relationships will be a key element in this effort.
JCFS will require a thorough understanding of the roles and responsibilities being requested, and the availability of sufficient funds to cover the cost of those obligations. It should be noted that the JCFS role as lead Agency does not imply any preferred provider status. Placement and
program participation decisions will always be based on client choice and self-determination.
Implementation/Action Plan
Ongoing beginning December 2012
Outreach to those on SCLI mailing list
Continuing growth and engagement (ownership) of participating community members. The continued maturation of an organized community movement in support of
individuals with I/DD and their families is considered essential. This may include public educational efforts, local community support outreach programs around the targeted cluster site communities. and general advocacy plans related to relevant I/DD issues and future governmental actions at the local, state and federal levels. Specific timelines and accompanying budgets should be developed within the first 3-6 months.
JCFS Services for People with Disabilities staff, through its case management program, will work with individuals and families who have received award letters to successfully secure Ligas funds through the appropriate state agencies. Referrals may be made to any of the current providers as listed above, and includes those with CILA as well as home based waiver funding.
6
o New JCFS residential program participants will be accepted when planning is complete and the required combination of public funding and philanthropic resources are confirmed.
o Other providers will apply their agency-specific admission criteria.
Scout locations for potential housing, short term versus longer term.
Partner with community providers for the provision of additional supportive services
In the next 3-6 months (Target: May 2013)
Recruit and hire program director
Begin initial resource development efforts to fund start-up of administrative team for development of 2 clusters within the next year. Goal is to raise three years of funding for administrative team so that there are sufficient resources to get the clusters operational. After Year 3, administrative costs will be substantially covered by ongoing program operating revenue/fundraising.
Recruit and hire balance of administrative team ( Recreational Specialist, .5 Development Associate, increase administrative support staff from .2 to .5 FTE)
In the next 6-9 months (Target: August 2013)
Begin new residential placements in first cluster site location (West Rogers Park) o Note: There is no restriction on opening residential facilities in any of the three
clusters at any time. West Rogers Park is identified only because of the two existing Jewish CILA programs already in place in that community.
Start with small home settings utilizing the impetus of the IDHS letters granting CILA funding.
Explore those with home based waivers for in home supports as well as potential Supported living.
Run social/recreational programming for members in the cluster site, potential members and other appropriate community members (becomes ongoing). Explore opportunities to partner with Special Recreational Associations (SRAs) and Jewish communal institutions in the cluster zone.
In the next 9-12 months (Target: December 2013)
Establish full small CILA participation in West Rogers Park. A viable cluster is defined for financial purposes as 4 CILAs serving a total of 16 people.
Begin discussions with potential Supported Living residents for West Rogers Park.
Begin discussions with potential residents with CILA funding for Cluster 2 (either Skokie or Highland Park) based on expressed client choice.
Total people in housing at close of Year 1= 16*
Year 2 (Target: May 2014)
Have Supported Living Residences in WRP serving a total of 8 people.
Serve 8 individuals with CILA funding in Cluster 2
7
Year 2 (Target: December 2014)
Add additional two CILA in Cluster 2. Total CILAs in cluster 2 equals 4, serving 16 people
Have Supported Living Residences in Cluster 2 area serving an additional 8 individuals
Total people in housing at close of Year 2= 48*
Year 3 (Target: December 2015)
Add third Cluster site, serving 24 individuals; in a combination of CILAs and Supported Living
Total people in housing at close of Year 3= 72*
Years 4-5
Based on resources and communal need, years 4 and 5 would be spent adding to the clusters. It is envisioned that an additional 8 people could be added into any site (either 2 CILAs, 1 CILA/2 Supported Living, 4 Supported Living). By the close of year 5,
maximum individuals served in any cluster is 32, total maximum is 96.
*Final mix of CILA vs. Supported Living participants will vary based on actual participant need. Actual timing of CILA creation will be both resource and demand-driven, and could be
expedited beyond estimated timeline above by additional funding becoming available.
