Only Jesus Knows
Resources
If you have a child with intellectual and/or developmental disabilities (IDD), it can be overwhelming to know where to turn for help and support. I'm here to help. Below are resources specifically for those residing in Illinois, but every state has resources; we just need to figure out how to access them.
Timeline of Important Steps
Below is a timeline of important steps to take as your child grows to adulthood, followed by helpful resources to guide you throughout your child's life.
Early Intervention
If you have questions or concerns about your child's development, speak to your child's physician. Ask him'her to make a referral for an EI assessment.
Early Childhood Education
If your child is in EI, they will transition to ECE. If they are not in EI but you have concerns, contact your child's physician. You can also reach out to your local school district for an ECE screening.
Special Education
According to the United States Department of Education, every child, regardless of the nature and severity of disabilities, is entitled to a Free Appropriate Public Education (FAPE). Section 504 and Title II require public schools to provide appropriate education and modifications, aids and related services free of charge to students with disabilities and their parents or guardians. Education and services are provided through your local school district. Contact your local school district or ISBE.
PUNS List
When your child turns seven years old, it is important to have them placed on the PUNS list. The PUNS list allows families to have access to various services as your child grows and transitions out of the school system.
Legal Guardianship
After your child turns seventeen years old, you will need to begin taking steps to obtain legal guardianship of them. It is vitally important that you be appointed as your child's legal guardian on or soon after their eighteenth birthday. Legal guardianship is necessary for you to have legal authority to speak to your child's physicians or make medical decisions. Contact a guardianship attorney in your area.
Legal Planning
Legal Will
As with any child, a Legal Will and Trust should be set up at birth. A Legal Will allows you to appoint someone you trust to act as your child's guardian in the unfortunate event of your death or if you are otherwise incapacitated.
Special Needs Trust
A special needs trust can be set up at the same time as your legal will. Once your child is eligible for Supplemental Security Income or disability, they are allowed no more than two thousand dollars in their name to obtain SSI. Any assets left in their name could jeopardize their eligibility. A special needs trust allows a certain percentage of your assets to be set aside for your child's use and managed by a designated adult. Also see ABLE in the list of resources below.
Resource Directory
A comprehensive list of organizations and services to support individuals with intellectual and developmental disabilities in Illinois.
ABLE National Resource Center
Connects people with disabilities and those who support them to information about the Achieving a Better Life Act and ABLE financial accounts.
Home - ABLE National Resource Center
Advocates for Access
Provides direct services, combined with advocacy for social change to allow greater integration of persons with disabilities into mainstream life.
Advocates for Access
The Arc of Illinois
Advocates for people with intellectual and developmental disabilities, families, and community organizations to ensure that people with disabilities can live, work, learn, and play in communities across the state.
The Arc of Illinois | Disability Assistance, Programs & Advocacy
Department of Rehabilitation Services (DORS)
Plays a crucial role in supporting individuals with disabilities by providing essential resources and services.
Illinois DORS Program: Eligibility, Application, and Services - LegalClarity
Division of Specialized Care for Children (DSCC)
Provides a variety of opportunities for professional development and learning for parents and professionals who touch the lives of young children, ages birth through eight, with an emphasis on children with special needs.
Division of Specialized Care for Children (DSCC) | StarNet Region II
Envision Unlimited
A full spectrum of care organization serving people with intellectual and developmental disabilities as well as mental health challenges from infants to senior citizens, regardless of race, gender, religion, or ability to pay.
Welcome to Envision Unlimited
Easterseals Disability Services
A nonprofit organization that provides health and human services, incorporated under the provisions of Section 501(c)(3) of the Internal Revenue Code. They focus on helping people—supporting people with disabilities, older adults, veterans, and their families.
Easterseals Disability Services | Home
Equip for Equality
A statewide organization that protects the rights and promotes the independence of people with disabilities in Illinois. It provides legal services, policy advocacy, monitoring, and training.
Equip for Equality
FAPE
Ensures Free Appropriate Public Education ensures Nondiscrimination on the Basis of Handicap in Programs and Activities Receiving or Benefiting From Federal Financial Assistance; and Assistance to States for Education of Handicapped Children.
Free Appropriate Public Education | U.S. Department of Education
Illinois Association of Rehabilitation Facilities
The voice of human service organizations in government. They have worked to provide agencies with individual consultation on issues that affect them specifically. IARF also commits itself to developing programs that return members' investment of their dues. Their purpose is "To assist in the development and improvement of services in Illinois."
Illinois Association of Rehabilitation Facilities
Illinois Department of Human Services - Division of Developmental Disabilities
Provides leadership for the effective management of the design and delivery of quality outcome-based, person-centered services and supports for individuals who have developmental disabilities.
IDHS - Division of Developmental DisabilitiesIllinois Department of Human Services - Division of Early Childhood
Helps strengthen and centralize the state's existing childcare, home visiting, and early intervention programs, as well as operationalize and create administrative capacity to establish sustainable infrastructure needs in order to streamline services. Working hand-in-hand with local communities throughout Illinois, the Division of Early Childhood provides low-income, working families with access to quality, affordable childcare; administers community-based prevention and intervention programs; and helps all children between the ages of birth to three with disabilities or delays to learn and grow.
IDHS - Early ChildhoodIllinois PUNS
A database that registers individuals who want or need Developmental Disability Waiver services (i.e. Community Integrated Living Arrangements, Home Based Supports, Child Group Homes) funded by the Illinois Department of Human Services/Division of Developmental Disabilities.
IDHS - Illinois PUNS - Division of Developmental Disabilities
Illinois State Board of Education (ISBE) Special Education Services Department
Responsible for ensuring the general supervision of all educational programs for children with disabilities in the state.
Special Education
Together For Choice
Offers educational resources and support on housing, services, regulations, and policies related to individuals with intellectual and/or developmental disabilities. Their mission is to unite to protect and advance the rights of individuals with intellectual and/or developmental disabilities (I/DD) to live, work and thrive in a community or setting of their choice.
Together For Choice | Protecting and advancing the rights of individuals with I/DDNeed Help Finding Resources?
Please feel free to contact me with questions. I'm here to help you navigate these resources and find the support your family needs.
Contact Me