Resources by Subject

*This is a non-exhaustive list. To submit a resource we missed, please use the form at the bottom of this page!

Advocacy

  • American Association of Intellectual & Developmental Disabilities: AAIDD is the oldest and largest interdisciplinary organization of professionals and others concerned about intellectual and developmental disabilities. They're tireless promoters of progressive policies, sound research, effective practices and universal human rights for people with intellectual and developmental disabilities.
  • Disability Rights Wisconsin: Helping people across Wisconsin gain access to services and opportunity through advocacy and legal expertise
  • Find Your Legislators: Contact your legislators and make your voice heard
  • Global Genes: Believes that together we can do more to tackle the challenges of rare disease, by educating, equipping, and empowering the global community with tools and resources to influence change. They connect rare disease patients, advocates and rare disease experts to help eliminate the challenges of rare disease.
  • National Alliance on Mental Illness: NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness
  • National Association for the Dually Diagnosed: Their mission is to provide leadership in the expansion of knowledge, training, policy and advocacy for mental health practices that promote a quality life for individuals with dual diagnosis (IDD/MI) in their communities
  • National Organization for Rare Disorders (NORD): NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them
  • National Resource Center for Supported Decision-Making: Here, you’ll find information about the Right to Make Choices – the right we all have to make our own decisions and direct our own lives
  • Save IRIS: Working to shape and maintain long-term care in Wisconsin
  • Survival Coalition Wisconsin: Focuses on changing and improving policies and practices that support people with disabilities
  • The Arc National: Promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes
  • The Arc Wisconsin: Promotes and protects the human rights of people with Intellectual and Developmental Disabilities
  • Wisconsin Board for People with Developmental Disabilities: Advocates on behalf of individuals with developmental disabilities
  • Wrightslaw: Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities

Benefits

Birth to Three/Early Intervention

  • Birth to Three: The Birth to 3 Program is a federally-mandated Early Intervention program to support families of children with developmental delays or disabilities under the age of three.

Camps

  • Easter Seals WI Camps: Campers can enjoy camp year-round with programming at both Camp Wawbeek and Respite Camp. Which camp you choose is based on the level of care needed.
  • Wisconsin Badger Camp: Outdoor recreational camp serving individuals with developmental disabilities
  • Wisconsin Lions Camp: Camp for individuals with various special needs.

Disabilities (General)

Disabilities (Organizations)

Education

  • A Day in our Shoes: IEP Resources, support and more from a special needs mom and advocate
  • Genesee Lake School: Genesee Lake School is a nationally recognized school located in Oconomowoc, WI dedicated to improving the lives of children, adolescents, and young adults with developmental disabilities, mental health disorders, neurological disorders, or emotional disturbances
  • Individuals with Disabilities Education Act (IDEA): Information about the IDEA Act
  • Latham Centers: Latham Centers, located in Cape Code, MA,  was founded in 1970 to provide residential care, education, and treatment for children ages 8–22. They serve intellectually disabled girls and boys with special needs as well as children and adults with Prader-Willi Syndrome.
  • The Richardson School: The Richardson School, located in Beloit, Brookfield, Madison and West Allis, is a therapeutic day school that specializes in working with children, adolescents and young adults who have diagnoses of developmental/neurological disabilities, and behavioral and emotional issues
  • Special Education in Plain Language: User-friendly handbook on special education laws, policies, and practices in Wisconsin
  • U.S. Department of Education: Promotes student achievement and preparation for global competitiveness by fostering educational excellence and ensuring equal access
  • The Wyatt Special Education Advocacy Training: The Prader-Willi syndrome one-stop shop for special education advocacy information

Employment

Family Support

  • Family Resource Centers: Family Resource Centers are a place where parents can learn to be the best parents they can be
  • Grandparent E-booklet from PWSA (USA)
  • New Grandparent Welcome from PWSA (USA): PWSA (USA) is here to help and support you as you grow in your role as the grandparent of a child with PWS and offer a free one year membership in our organization, an amazing online support community, extensive encouraging and informative printed materials, and more, to our newly diagnosed grandparents
  • Parent to Parent of Wisconsin: The opportunity to connect with other parents of children with disabilities with similar experiences
  • PWSA (USA) Grandparents Facebook Group: PWSA (USA) Grandparents is a sharing and support group for Grandparents of children (of any age) with Prader-Willi Syndrome
  • Parents of Recently Diagnosed Welcome from PWSA (USA): PWSA (USA) would also like to present you with a free one-year PWSA (USA) membership (USA only), including a subscription to The Gathered View, our bi-monthly newsletter and other benefits, such as the PWSA Parent Mentoring Program and Age-specific online support communities
  • Sibling Support Project: Dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns
  • Waisman Center Grandparent Coffee Group: The grandparent coffee group meets at the Waisman Center to share advice and discuss concerns as well as learn about resources that can help create positive environments within families and communities
  • WisconSibs: Connecting siblings with resources for their lifelong journey

Financial

  • ABLE National Resource Center: (ANRC) is a collaborative whose supporters share the goal of accelerating the design and availability of ABLE accounts for the benefit of individuals with disabilities and their families
  • Private Wealth Management (Appleton, WI): Private Wealth Management Group is uniquely qualified to provide guidance and expertise in the areas of Wealth Management and Special Needs Planning. With over 35 years of financial experience and skill, we help our clients plan for and achieve their goals and dreams, as well as understand the challenges of caring for an individual with special needs.
  • Ronald McDonald House: Provides a place for families to call home so they can stay close by their hospitalized child at little to no cost

Guardianship and Transition Planning Information

Hospitals

Housing

Post-Secondary Education

  • Bethesda College of Applied Learning: The Bethesda College of Applied Learning is a unique, two-year post secondary certificate program where people with intellectual and developmental disabilities can realize their dream of receiving a college education
  • Edgewood College (Cutting Edge): The Cutting Edge is an individualized approach to education and inclusion in college for students with intellectual developmental disabilities
  • Madison College (Campus Connect): Campus Connect is an innovative approach to inclusive post secondary education for adult learners with intellectual disabilities
  • Think College: College options for people with intellectual disabilities
  • Shepherds College: Post-secondary educational program that equips young adults with intellectual and/or developmental disabilities to successfully transition from school to work, home to independent living

Prader-Willi Syndrome (National and International Organizations)

  • Prader-Willi Syndrome Association (USA): An organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.
  • International Prader-Willi Syndrome Organisation: IPWSO provides PWS support and education for over 100 countries, and translation where possible. Key contacts are also available in the member and affiliate countries
  • Foundation for Prader-Willi Research: The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research

Prader-Willi Syndrome Registry

  • Global Prader-Willi Syndrome Registry: The purpose of the registry is to develop a comprehensive database of individuals with PWS to better understand the full spectrum of PWS characteristics, to expedite the completion of clinical trials, and to determine areas of needed research and treatments to improve the lives of those affected by PWS

Products

  • Alert Me Bands: Alert Me Bands communicate who to contact in an emergency situation when you can’t
  • Feel Better Friends: handmade dolls stuffed with love and well wishes custom made with the child’s likeness in mind, crafted by volunteers and donated to children battling cancer and other illnesses
  • GizmoPal Watch from Verizon: Quickly make calls to and from the GizmoPal 2. Locate it from your phone, so you know where your child is, or get notifications if your child crosses set GPS boundaries
  • Handwriting without Tears Program: uses multisensory, developmentally appropriate strategies to increase success with early writing skills
  • Refrigerator Locks by Marinelock LLC: For a 10% discount enter the coupon code PWSA10
  • Refrigerator Locks by SecureRefrig: Magnetic lock with keypad
  • Sharing The Weight: a non profit organization that makes and distributes weighted blankets to special needs children free of charge
  • Signing Time: teaches children of all abilities and ages how to communicate using American Sign Language (ASL)

Publishers/Publications

  • Brooks Publishing Co: Quality resources for all learners
  • The ORP Community: the ORP Library shares stories and resources about Bullying, Autism Spectrum Disorder (ASD), Asperger’s, Reactive Attachment Disorder (RAD), and Prader-Willi Syndrome (PWS)
  • Publications from PWSA (USA): booklets, pamphlets, books and other materials on a variety of topics about Prader-Willi syndrome
  • Woodbine House: Trusted source for books about disabilities

Recreation/Activities

  • iCan Shine Bike Camps: iCan Shine provides quality learning opportunities in recreational activities for individuals with disabilities
  • Little League Challenger Baseball: The Little League Challenger Program is Little League’s adaptive baseball program for individuals with physical and intellectual challenges
  • Miracle League Baseball: Provide opportunities for children with disabilities to play Miracle League baseball, regardless of their abilities
  • Special Olympics Wisconsin: Provides year-round sports training and competition in a variety of Olympic-type sports
  • Please make sure to check locally for activities and programs in your area. Some YMCA's have programming for those with special needs. Search tip: Search online using key words such as "Adaptive", "Special Needs", "Disabilities", "All Abilities" along with the name of your city/county.

Sex and Relationships

  • Terri Couwenhoven: Terri Couwenhoven MS, CSE is a well known sex educator and author, specializing in the design and implementation of sexuality programs and resources for people with cognitive disabilities, their parents, and the professionals who support them

Siblings

  • WisconSibs: Serving siblings of people with disabilities along their lifelong journey through peer support programs, education and networking opportunities, leadership development, and more. 

  • Sibling Support Program: Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.  

Spanish Resources

  • ALAS: Alianza Latina Aplicando Soluciones is a non-profit organization dedicated to promoting the independence of families of children and youth with diverse abilities in Wisconsin

Technology

  • Center on Technology and Disability: Free resources about assistive and instructive technology for individuals with special needs
  • Moms with Apps: Moms With Apps is a blog supporting the thoughtful use of technology with a family-friendly point of view
  • WisLoan: The WisLoan program offers loans for assistive technology

Therapies


Families and Providers:

Resources listed on this website are provided for informational purposes only. PWSA of Wisconsin, Inc. does not endorse any particular therapy or provider. Be sure to talk with a trusted physician about what interventions and approaches are most appropriate for your child or person with PWS in your care.

PWSA of Wisconsin, Inc. | PO Box 324 Menasha, WI 54952 | (920) 733-3077 | progdir@pwsaofwi.org

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