Transition: Healthcare Resources
From PUNS Enrollment to DD Waiver Services Flowchart
The Arc of Illinois’ Ligas Family Advocate Program (LFAP) provides information and outreach to adults with intellectual and developmental disabilities and their families who are selected from the PUNS (Prioritization of Urgency of Need for Services) or notified in advance of a future PUNS selection.
LFAP’s resources include a “Finding Your Way” flowchart roadmap that outlines the steps from PUNS enrollment to developmental disability waiver services.
Getting the Care You Need: A Guide for People With Disabilities
“Getting the Care You Need: A Guide for People with Disabilities” aims to empower patients with disabilities by explaining their rights to accessible care.
The Centers for Medicare & Medicaid Services (CMS) provides this resource. It is available in multiple languages, including:
GLMA is a national organization committed to ensuring health equity for lesbian, gay, bisexual, transgender, queer (LGBTQ) and all sexual and gender minority (SGM) individuals.
GLMA provides resources for patients, including a provider directory.
Got Transition aims to help youth and young adults move from pediatric to adult health care. Its website includes frequently asked questions and resources for youth and young adults as well as parents and caregivers.
The site also includes an animated video “What is Health Care Transition? HCT 101” for youth, young adults and families.
How SSI and SSDI Can Help Patients
The Patient Advocate Foundation (PAF) provides valuable information and understanding to patients navigating the healthcare system.
PAF’s Education Resource Library offers information on a wide variety of individual health and health insurance-related topics as well as understanding Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI).
Many of PAF’s resources are also available in Spanish.
PAF is also available by phone Monday – Friday, 7:30 a.m. – 4 p.m., at (800) 532-5274.
Illinois Disability Benefits 101
Illinois Disability Benefits 101 is a free, user-friendly, Illinois-specific website that helps work through the myths and confusion of Social Security benefits, health care, employment and more. It is a one-stop shop for information, resources, and tools to motivate and support employment and community inclusion for individuals with disabilities, their families and professionals.
Lifespan Disability Clinic in Chicago
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
Mental Health Resources for LGBTQI Individuals
The lesbian, gay, bisexual, transgender, queer, questioning, intersexed (LGBTQI) community represents a wide diversity of thought, perspective, understanding and experience. For individuals identifying as LGBTQI, it’s important to recognize how your experience of sexual orientation and gender identity relates to your mental health.
The National Alliance on Mental Illness (NAMI) provides a variety of resources as well as important things to consider when seeking an LGBTQI-competent mental health care professional.
National Resource Center for Patient/Family-Centered Medical Home
Family members are the primary caregivers and support in a child’s life. Practices and healthcare organizations that are truly family-centered provide care in equal partnership with families, caregivers and children.
This page for families and caregivers from the National Resource Center for Patient/Family-Centered Medical Home includes tools, resources and links to information that will assist families in successfully partnering with their child’s medical home. It includes templates for how to build a care plan for your child.
National Resource Hub for Moving to Adult Health Care for Youth with Disabilities
The Center for Transition to Adult Health Care for Youth with Disabilities offers a wide range of tools to empower youth and young adults with intellectual and developmental disabilities (ID/DD) ages 12 to 26 to direct their transition from pediatric to adult care. This national site is a one-stop shop where young people and their families, clinicians, and direct care providers can find videos and other resources for understanding and navigating the transition to adult health care.
Site resources include:
- An “Introduction to Health Care Transition (HCT)” for youth and young adults
- Videos and interactive quizzes
- Changes in insurance and legal rights
- Quick guides and infographics