Support Programs for Individuals with Disabilities in Illinois
The Arc of Illinois Ligas Family Advocate Program and Family Support Network provide valuable assistance and advocacy for individuals with disabilities and their families in Illinois. The programs offer support, guidance, and resources to navigate the adult developmental disabilities system, access services, and receive essential information. Contact them for assistance with barriers or problems within the system, seeking resources, or referral to key agencies.
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The Arc of Illinois Ligas Family Advocate Program & Family Support Network Shirley Perez, Program Director Megan Mutti, Senior Ligas Family Advocate 1
Programs of the Arc of Illinois Ligas Family Advocate Program Family Support Network Family to Family Health Information Center Illinois Life Span Family Transition Project Consumer Stipend Program Training & Advocacy Learn more: https://www.thearcofil.org/ 2
Ligas Family Advocate Program The purpose of the Ligas Family Advocate Program is to provide family-to-family support for individuals and their families who are selected through the Illinois Department of Human Services, Division of Developmental Disabilities (IDHS/DDD), Prioritization of Urgency Needs of Needs for Services (PUNS) as a result of the Ligas Consent Decree. We reach out directly to families and self-advocates who receive Early PUNS Notification Letters as well as individuals that receive actual Letters to apply for services as a result of being selected from PUNS. Learn about service and support options available for adults with I/DD in Illinois, as well as receive guidance on system navigation Ligas Family Advocate Program: https://www.thearcofil.org/about-us/programs/ligas-family-advocate-program/ Shirley Perez, LFAP Program Director: Shirley@thearcofil.org Megan Mutti, Senior Ligas Family Advocate, Central & Southern IL: megan@thearcofil.org Ruth Aguilar, Ligas Family Advocate, Northern IL: ruth@thearcofil.org Why call LFAP? You have recently been selected from the PUNS list, received an Early Notification Letter, or need guidance regarding the process for accessing adult DD supports and service The Ligas Family Advocate Program is funded by the Illinois Department of Human Services 3
Family Support Network The mission of the Family Support Network is to unify individuals with disabilities and their families to advocate for funding, services and community resources that strengthen and support the individual and the family directly by responding to their individual needs and empowering them to live in their own homes. Why call FSN? You need assistance and advocacy due to a barrier or problem you are experiencing with the adult DD system. 4
Why reach out to the Arc of Illinois? Seeking information about resources or system navigation Interest in attending trainings and/or advocacy opportunities Recently selected from the PUNS list Questions about the services available in the DD waiver programs Running into barriers in getting needed services/supports Referral to key agencies in DD supports/information 5
High Quality Family Support Programs (Snow, K.) Family Driven: Each family leads the decision-making process concerning the type and amount of support they receive; Easy To Use: Families are not overwhelmed by paperwork and red tape; and Flexible: Families can choose supports and services based on their individual needs and preferences. Kathie Snow is the parent of two children, one of who has a disability, a 1991 Graduate of the Texas Partners in Policymaking Leadership training program. She now lives in Colorado with her family and has recently been awarded a contract to be the Coordinator for Idaho partners for 1997. 6
Family Support Dual Roles Family Engagement in Quality/Design Participation in leadership within DD organization Advocacy efforts at all levels Participation in hiring process at organization Program & Policy evaluation Participating as educators of staff Family-to-Family Support Mentoring/Parent Matching Programs Education for families Respite Social gatherings Sibling Support 7
High Quality Family Support Programs (Snow, K.) Focus on the entire family; Change as the family s needs roles, and ages change; Encourage families to express their own needs and decide how their needs will be met; Treat people with disabilities and their families with dignity by respecting their individuals choices and preferences; Respect cultural, economic, social, and spiritual differences; Encourage families to use the natural community resources; and Provide supports and services that are easy to find and easy to use. Provide families with equal access regardless of where they live Kathie Snow is the parent of two children, one of who has a disability, a 1991 Graduate of the Texas Partners in Policymaking Leadership training program. She now lives in Colorado with her family and has recently been awarded a contract to be the Coordinator for Idaho partners for 1997. 8
Family Centered Supports (Snow, K.) Information and referral Service coordination Temporary relief/respite Family counseling Parent/sibling education Day or child care Financial assistance Future financial planning Mutual support groups Housing modifications Kathie Snow is the parent of two children, one of who has a disability, a 1991 Graduate of the Texas Partners in Policymaking Leadership training program. She now lives in Colorado with her family and has recently been awarded a contract to be the Coordinator for Idaho partners for 1997. 9
Parent Group - Questions for Parents to Consider How are we included in programmatic decision-making at the organization? Are we included in quality improvement work? Can we easily shift/adjust services and supports if things change within our family or with our loved one? Do family members and self-advocates participate in leadership groups for the organization? Does the parent program make life easier for you to navigate the DD system? Is there a program that supports family-to-family mentorship? 10
Best Practices in Family Advocacy (Snow, K.) The 10 Commandments of Community Advocacy OR Getting Out of Systems and Into Your Community Look for natural supports Be specific and flexible. Expect inclusion Experience the dignity of risk Become a regular person. Develop and nurture relationships. Be proactive, not reactive. Think win/win, not win/lose. Remember to use these keys to success : Identify & Value Your Allies Combine Style and Substance Respect and Teach Your Adversaries Practice Finesse and Diplomacy Be patient. *Kathie Snow is the parent of two children, one of who has a disability, a 1991 Graduate of the Texas Partners in Policymaking Leadership training program. She now lives in Colorado with her family and has recently been awarded a contract to be the Coordinator for Idaho partners for 1997. 11
Advocacy The Arc of Illinois coalition of people with disabilities, families and community organizations advocate each year at the state level to increase investment in community living options and transform the services and supports system. We need every person s voice to make real change in Illinois. Each year the Arc asks stakeholders to participate in a public policy agenda setting process. Arc leaders participate in legislative meetings, testify at hearings, submit testimony and rally in Springfield. Join us today! Get involved and receive advocacy updates: https://www.thearcofil.org/about-us/programs/advocacy/ 12
Common Stressors in Parenting an Adult with I/DD Financial strain Marital stress Managing concerns regarding long-term decision-making Isolation due to parenting demands Fragmented services/complicated system navigation Exclusion from participating in decision-making Kathie Snow is the parent of two children, one of who has a disability, a 1991 Graduate of the Texas Partners in Policymaking Leadership training program. She now lives in Colorado with her family and has recently been awarded a contract to be the Coordinator for Idaho partners for 1997. 13
Family/Caregiver needs across time Consider expansion of circle of support what are your natural supports? Informal & formal connections evolve Desire or necessity to step back from primary caregiving role, but not from participation in decision-making May need additional education and support to advocate for changes in their loved ones support needs Sibling and extended family engagement may shift Increased engagement in system-wide advocacy Adult siblings looking for guidance and support? Contact the Sibling Leadership Network: https://siblingleadership.org/ 14
Core Considerations Future Planning Guardianship, Shared Decision-Making, Alternatives Special Needs Trusts ABLE Accounts *Services and Supports transitions for loved one with I/DD* Exploring Future Planning? Consider two core resources: Special Needs Alliance: https://www.specialneedsalliance.org/ Arc of the United States Center for Future Planning: https://futureplanning.thearc.org/ 15
Upcoming events (registration required): Home-Based Boot Camp: Families https://www.thearcofil.org/event/virtual-home-based-boot-camp-for-families/ Ligas Family Advocate Know Your Options https://www.thearcofil.org/event/ligas-family-advocate-virtual-know-your-options-8/ Health Care Coverage & Options https://www.thearcofil.org/event/illinois-health-care-coverage-options-and-benefits- information-for-people-with-disabilities-4/ Person Centered Planning https://www.thearcofil.org/event/ils-lunchtime-webinar-more-information-to-come-2/ 16
Advocacy Priorities 2020 (updates available, Fall 2021) https://3m4psa58y9z2v1hqruw7ram5-wpengine.netdna-ssl.com/wp- content/uploads/2020/05/2020-POLICY-AND-ADVOCACY-PRIORITIES- General.docx 17
Attend a Training: Consumer Stipend Fund The Arc of Illinois administers The Consumer Involvement Fund Program and distributes consumer stipends to enable people with developmental disabilities and their family members to attend conferences of their choice that are directly related to developmental disability issues. This program is funded by the Illinois Council on Developmental Disabilities. An in-state or out-of-state conference directly related to developmental disabilities. Assistance may be provided for: Conference Registration Child Care Respite Care Meals Personal Attendant Hotel Transportation Who can apply? Illinois residents A person with a developmental disability Family members of a person with a developmental disability A guardian/foster parent of a person with a developmental disability How much can I apply for? $450 per person per 12 month period $750 per family per 12 month period 18
Apply for Consumer Stipend Funds https://www.thearcofil.org/about-us/programs/financial-assistance-for- trainings/consumer-stipend-funds-application/ 19
Contact us! Shirley Perez, Program Director, Ligas Family Advocate Program & Family Support Network: Shirley@thearcofil.org Megan Mutti, Senior Ligas Family Advocate, Central and Southern IL: Megan@thearcofil.org Ruth Aguilar, Ligas Family Advocate, Northern IL: Ruth @thearcofil.org Shakari Asbury, FSN Program Liaison: Shakari@thearcofil.org Thank you! 20
