National PTA promotes family-school partnerships and building community at the local, state and national levels. Its website offers a variety of family-focused resources, including a Special Education toolkit, Parents’ Guide to Student Success, College and Career Readiness resources and more.

 

Kids in Need of McHenry County (KINMC) helps foster families with clothing, school supplies, playdates, birthdays and more. KINMC also provides a variety of supports and services for intact families, kinship placements, and other families referred by caseworkers, social workers, and other service agencies. Its programs include:

• The Second Bridge resource program and distribution center where families can shop for clothing and supplies for free
• A safe space for children to visit with their biological families and receive therapy, and caregivers can receive parent coaching
• Back-to-school and holiday events

Families can register for help on KINMC’s website.

For questions, please contact KINMC at contact@kinmc.org or (815) 310-5437 (KIDS).

The United Leukodystrophy Foundation (ULF) is a nonprofit organization that provides support and resources to patients with leukodystrophy and their families. ULF can help families find medical care, access genetic counseling, networking opportunities, and obtain financial assistance. It also provides funding for medical research each year.

ULF is based in DeKalb, Ill. Its Services and supports also include:

• Leukodystrophy frequently-asked questions and a glossary of terms
• Clinical trials
• Virtual support groups
• The Hultman Memorial Fund for families facing financial hardship
• Webinars and an annual family conference

For questions, please contact ULF at (815) 748-3211 or office@ulf.org.

Autism Speaks offers autistic teens and their families inspiration, information, toolkits and support for creating a roadmap for their transition to adulthood journey. Its transition planning tools for individuals and their families include:

• The Transition Toolkit covering self-advocacy skills, legal matters, housing, employment options and more.
• An IEP Transition Plan Checklist to help students with autism and their parents/caregivers create and review an Individualized Education Program (IEP) transition plan.
• The Workplace Inclusion Now (WIN) free training course “Supporting Your Family Member in Employment” with information and insights into planning for employment.
• The Healthcare Transition Roadmap for help moving from a pediatrician to a primary care physician. The guide is aimed at individuals ages 12 to 21 but includes information for individuals with autism of all ages, such as finding specialists, understanding legal rights, self-advocacy tips and special guidance for LGBTQ+.

Unique Sweets provides delicious treats and a safe space for people with autism and other disabilities to participate in life skills training. Team members participate in event planning, purchasing supplies, baking, decorating and packaging and receive a stipend to cover their expenses to get to the kitchen. Unique Sweets also hosts social events throughout the year to foster peer relationships, social skills and community support.

Unique Sweets also offers:

• Life skills (virtual or in-person) peer-led cooking classes
• Social events and an annual Party With a Purpose
• Inclusive workshops, information sessions and social events with other organizations
• Referrals to other programs and services as needed

If you have any questions, please email Unique Sweets at contact@uniquesweetsinc.org.

KEEN (Kids Enjoy Exercise Now) St. Louis offers youth with disabilities and volunteer coaches free, non-competitive, one-on-one programs providing physical activity, fun and support for the overall health and well-being of all participants. Programs are open to all youth ages 5 to 21 with physical or developmental disabilities. Indoor and outdoor recreational activities are available year-round. Registration for programs takes place quarterly.

KEEN St. Louis programs are age appropriate and tailored to each athlete’s needs. Athletes can choose from a wide variety of camps, programs and day trips, including sports, yoga, swimming, dance and more. Fill out the New Athletes Enrollment Form online to learn more about becoming a KEEN St. Louis athlete.

For questions, contact KEEN St. Louis at (314) 399-9458 or info@keenstlouis.org.

 UI Health’s Lifespan Disability Clinic provides one-stop, comprehensive primary care for children and adults with intellectual and developmental disabilities. The Lifespan Disability Clinic is a welcoming space that aims to collaborate with each individual to achieve their personal goals, such as obtaining appropriate accommodations, coordinating care and supporting the transition to adulthood.

The Lifespan Disability Clinic has two locations. Services include:

• Primary care (routine health exams)
• Support for the transition to adulthood
• Care coordination
• Education and resources

Autism Eats provides autism-friendly non-judgmental environments for family dining, socializing and connecting with others who share similar joys and challenges. Autism Eats hosts dinners and events year-round. They also provide comprehensive autism awareness training and certification for restaurant management and staff.

Autism Eats dinner parties:

• Take place in private rooms of restaurants or function facilities.
• Serve food buffet or family style so there is no waiting.
• Adjust music and lighting to accommodate those with sensory sensitivity.

For questions, please visit Autism Eats Contact Us page.

Chicago Adaptive Sports provides programming, support and advocacy for individuals with physical and visual disabilities of all ages and backgrounds. The organization adapts programming to meet the needs of individuals who use manual or power wheelchairs or have other ambulatory disabilities such as amputation, cerebral palsy, spina bifida, stroke and other spinal cord or orthopedic impairments. No prior experience is necessary to participate. Financial assistance is available. Participants will not be turned away due to their ability to pay.

Chicago Adaptive Sports programs include:

• Chicago No Limits Fishing
• Wheelchair basketball
• Wheelchair softball
• Wheelchair tennis
• Sled hockey

Charting the LifeCourse Nexus or LifeCourse Nexus framework was developed by families to help individuals with disabilities at any age or stage of life and their families develop a vision for a good life. LifeCourse Nexus provides free infographics, YouTube videos and step-by-step tip sheets to help people of all ages and abilities with identifying their dreams and desires, thinking about what they need to know and do, identifying how to find or develop supports, and discovering what it takes to live the lives they want to live.

The LifeCourse Nexus Library features a wide range of downloadable materials to help with the transition from school to community, including:

• Person-centered tools for exploring your desires and unique needs
• The family perspective booklet and tip sheets
• Kits (The Life Domains) focusing on life stages and exploring employment, healthy living, housing options and other areas
• Videos and step-by-step tip sheets on using the Integrated Supports Star tools to bring everything together