Resources
Advocacy Groups - Wisconsin
Agencies and Programs - Wisconsin
Financial Resources
Leadership and Learning Opportunities for Parents and Families
Leadership and Learning Opportunities for Youth
National Organizations
Newborn Screening
Professional Societies
Transition to Adulthood
Advocacy Groups - Wisconsin
Autism Network through Guidance, Education & Life (A.N.G.E.L., Inc)
A.N.G.E.L.'s mission is to offer financial and emotional support to each individual child and family with an autism spectrum disorder (ASD) with compassionate guidance, and delivery of therapies or services of that family's choice.
Autism Society of Wisconsin (ASW)
The Autism Society of Wisconsin's (ASW) mission is to improve the lives of all affected by autism in Wisconsin. ASW provides support and information to the autism community in Wisconsin. ASW sponsors an annual conference, a free quarterly newsletter, maintains a Wisconsin directory of people offering information/assistance, and provides information and referral.
Down Syndrome Association of Wisconsin (DSAW)
The Down Syndrome Association of Wisconsin (DSAW) is an organization created for individuals and families affected by Down syndrome to offer assistance, create awareness and gain acceptance of Down syndrome throughout our communities. Throughout the state of Wisconsin, DSAW consists of more than 1500 members. DSAW's main office is located in St. Francis, a southeastern suburb of Milwaukee county. DSAW also has several regional chapters throughout the state which are organized and run by parent volunteers - DSAW Chippewa Valley Connection, DSAW Fox Cities and DSAW Green Bay Connection.
Epilepsy Foundations in Wisconsin
The Epilepsy Foundations of Wisconsin provide case management, counseling, advocacy, job placement, skills training, camp for children, and other important resources for those affected by seizures disorders.
- Epilepsy Foundation Heart of Wisconsin
- Epilepsy Foundation Southeast Wisconsin
- Epilepsy Foundation Western Wisconsin
Family Support and Resource Center
Family Support and Resource Center provides a catalog of helpful websites and resources for families of children with disabilities. Resources fall into categories including: Community Inclusion, Dane County and Wisconsin Services, Resources for Spanish-Speaking Families, Education and Transition, Housing Resources, Parent Information, Support and Advocacy, Respite Care, Positive Behavior Support and more!
Family Voices of Wisconsin is a statewide network of families who have children and youth with special health care needs and/or disabilities and those who work on their behalf. Family Voices of Wisconsin supports families by providing information, training and leadership opportunities so that families can be informed and effective partners in their child's care and in the systems that support them.
March of Dimes Wisconsin Chapter
The mission of the March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality. March of Dimes carries out this mission through research, community services, education and advocacy to save babies' lives.
Parent to Parent of Wisconsin provides parent support to parents of children with special needs through a one-to-one connection with another parent who has similar experience and who knows firsthand about the feelings and realities that come with having a child with special needs.
Prader-Willi Syndrome Association of Wisconsin (PWSA)
The mission of the Prader-Willi Syndrome Association of Wisconsin's (PWSA) is to support, educate and advocate for persons with Prader-Willi syndrome, their families and professionals in meeting the challenges of this disability.
Wisconsin Family Assistance Center for Education, Training & Support, Inc. (WI FACETS)
Wisconsin Family Assistance Center for Education, Training & Support, Inc. (WI FACETS) is a nonprofit organization serving Wisconsin children and adults with disabilities, their families and those who support them. WI FACETS was founded in 1995 by parents who believed that parents are the best advocates for their children. WI FACETS operates the a variety of programs to help parents, professionals and others support and enrich the lives of children with disabilities.
The mission of Wisconsin Upside Down is to empower individuals with Down syndrome by providing them, their families, and the community with the best information, advocacy, and support. The goal of Wisconsin Upside Down is to offer life-long support for people with Down syndrome through programs aimed at prenatal diagnoses to issues facing adults with Down syndrome. Wisconsin Upside Down offers support ranging from adaptive arts programs, inclusion programming for educators, prenatal support, training for medical professionals, and financial aid to the families of cancer patients, who have Down syndrome.
Wisconsin Youth First's website was created by a group of youth with disabilities for youth in the state of Wisconsin so they could find information about youth leadership and how to get involved in one, convenient location.
Agencies and Programs - Wisconsin
Aging and Disability Resource Centers
Aging and Disability Resource Centers (ADRCs) are the first place to go with your aging and disability questions. ADRCs are service centers that provide a place for the public to get accurate, unbiased information on all aspects of life related to aging or living with a disability.
Center for Patient Partnerships
The Center for Patient Partnerships helps patients with life threatening or serious chronic illness make informed decisions pertaining to health care. Information and services are intended to empower patients through patient advocacy. Patients and families can find help related to psychosocial, financial, and legal issues.
Children and Youth with Special Health Care Needs Program Resource Centers
Wisconsin's five Children and Youth with Special Health Care Needs Regional Centers are dedicated to supporting families with children and youth with special health care needs and the providers who serve them. The Centers are staffed by specialists who can help get answers, find services and connect you to community resources. Their services are free and private.
Disability Rights Wisconsin helps people across Wisconsin gain access to services through advocacy and legal expertise. Disability Rights Wisconsin supports people of all ages including people with developmental disabilities, mental illness, people with physical or sensory disabilities and people with traumatic brain injury.
Family Care is a comprehensive and flexible long-term care service system, which strives to foster people's independence and quality of life, while recognizing the need for interdependence and support.
Include, Respect, I Self-Direct (IRIS)
IRIS is a self-directed, long-term care option for elderly people and adults with disabilities where the individual creatively use resources to help achieve the life he/she wants with the support needed.
The goal of the Pathways to Independence Natural Supports project is to discover, support, and disseminate creative and promising approaches for supporting youth with disabilities to participate more fully and naturally in school, work, and community activities.
Wisconsin First Step Program provides information and referral services to assist Wisconsin families and providers working with children and youth with special needs. A 24-hour hotline is available to answer questions and will link families to their regional center for additional resources.
Wisconsin Birth to Three Program
Wisconsin's early intervention program designed for infants and toddlers with developmental delays and disabilities. The staff and family create an individualized family service plan, which may include services involving: family education, developmental education services, occupational therapy, physical therapy, and others. Each county has a designated agency that is responsible for operating the Birth to Three program.
Wisconsin Chronic Disease Program (WCDP)
The Wisconsin Chronic Disease Program (WCDP) offers assistance to Wisconsin residents with chronic renal disease, hemophilia, and adult cystic fibrosis. The WCDP is funded entirely by state dollars. The program pays health care providers for disease-related services and supplies provided to certified WCDP participants after all other sources of payment have been exhausted.
Wisconsin Department of Health Services
The Department of Health Services (DHS) in Wisconsin is committed to protecting and promoting the health and safety of the people of Wisconsin. DHS works to assure the health, safety, and well-being of Wisconsin citizens while emphasizing prevention, improve the lives of Wisconsin seniors and people with disabilities, and increase opportunities for children to grow up safe, healthy, and successful in strong families.
Wisconsin State Genetic Services
The Wisconsin State Genetics Program strives to make sure Wisconsin families and health care providers are aware of and have access to the genetic services available in the state. A genetic counselor is available as a resource to families and health care providers and can answer questions, provide referrals to genetics services, or offer education and training to those interested.
Wisconsin Stillbirth Service Program (WiSSP)
The Wisconsin Stillbirth Service Program (WiSSP) was developed to provide families and health professionals of Wisconsin with comprehensive services for the evaluation of stillborn infants. WiSSP provides support information as well as medical information pertaining to stillbirths.
Financial Resources
BadgerCare Plus provides health coverage for Wisconsin families. Two plans include a standard plan for families with an income at or below 200% of the Federal Poverty Level, and a benchmark plan that provides more limited services for families with an income above 200% Federal Poverty Level, and for self-employed parents and caretakers.
Children's Long term Support (CLTS) Waivers
These waivers are designed specifically to serve individuals and families with children with mental health, physical or developmental disabilities. This allows flexibility in the use of Medicaid funds.
Community Options Program (COP) and COP Waiver
The Community Options Program (COP) and the Community Options Program Waiver (COP-W) help people get the long-term support they need to remain in their own homes and communities. The goal is to provide cost-effective alternatives to expensive care in institutions and nursing homes.
Early Periodic Screening Diagnostic and Treatment/Health Check (EPSDT)
The Early Periodic Screening, Diagnosis, and Treatment (EPSDT) Program is the child health component of Medicaid. It's required in every state and is designed to improve the health of low-income children, by financing appropriate and necessary pediatric services. This website provides information about how EPSDT works with public health, families, managed care organizations, pediatricians, and other health providers.
The Family Support Program provides individual services and supports to families that include a child with severe disabilities. The Program offers information and help in finding services and maximizing community resources, has limited funding to buy needed services and goods that can't be bought through other sources, and help in linking families with other families to strengthen natural supports.
The Katie Beckett Program is a special eligibility process that allows certain children who are residents of Wisconsin with long-term disabilities or complex medical needs, living at home with their families, to obtain a Wisconsin Medicaid card. Children who are not eligible for other Medicaid programs because the income or assets of their parents are too high, may be eligible for Medicaid through the Katie Beckett Program. Check out the website for eligibility criteria.
Supplemental Security Income (SSI)
Supplemental Security Income (SSI) is a Federal income supplement program funded by general tax revenues (not Social Security taxes). It is designed to helped aged, blind, and disabled people who have little or no income.
Leadership and Learning Opportunities for Parents and Families
Parents as Leaders (PALS) is an opportunity for parents with children with special health care needs from birth through six to gain leadership skills in areas of policy, education, and community services. The program is designed for parents/caregivers who:
- are ready to become leaders and advocates in their communities;
- want to learn more about resources for children with special needs;
- want to meet some of the key leaders who make the policies and run the programs that affect children with special needs and their families in Wisconsin; and
- are interested in meeting other parents from around the state.
Parents In Partnership (PIP) provides leadership opportunities for parents, foster parents or other caregivers of children ages six to fourteen. Parents have the opportunity to develop leadership skills, support networks, and positive parent-professional partnerships. Parents learn about the special education process, policymaking, and community inclusion. This website also includes information pertaining to Youth in Partnership with Parents for Empowerment (YIPEE).
Leadership and Learning Opportunities for Youth
Easter Seals has services designed for people with disabilities and special needs to increase independence and overcome obstacles in order to reach personal goals. Services include: camps, respite services, self-employment services, and educational programs.
Kids As Self Advocates (KASA) is a national, grassroots project created by youth with disabilities for youth. KASA knows youth can make choices and advocate for themselves if they have the information and support they need. Some of the resources include tipsheets about staying safe, education, work, leisure, dating and relationships, transportation, technology and others.
The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns. The sibling support project runs "sibshops" that are designed for siblings to obtain peer-support in a fun and recreational environment.
National Organizations
Family Village: A Global Community of Disability-Related Resources
The Family Village is a web site for children and adults with disabilities, their families, and their friends and allies. Family Village brings together thousands of online resources in a organized, easy-to-use directory. The centerpiece of Family Village is the library, where visitors can find information on over 300 diagnosis.
Genes and Disease is a collection of articles that discuss genes and the diseases that they cause. The genetic disorders are organized by the parts of the body that they affect. With each genetic disorder, the underlying mutation(s) is discussed, along with clinical features and links to key websites.
Genetic and Rare Conditions provides information on lay advocacy and support groups and information on genetic conditions/birth defects for professionals, educators, and individuals.
Genetic Alliance is the world's leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. Genetic Alliance's network includes more than 1,000 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations.
Genetics Home Reference is the National Library of Medicine's web site for consumer information about genetic conditions and the genes or chromosomes related to those conditions. Information is provided on genetic conditions, genes, chromosomes, and a glossary of medical and genetic definitions.
Organization of Teratology Information Specialists
OTIS, the Organization of Teratology Information Specialists, is a non-profit organization made up of individual services (TIS) throughout North America. They are dedicated to providing accurate evidence-based, clinical information to patients and health care professionals about exposures during pregnancy and lactation.
Newborn Screening
Save Babies Through Screening Foundation
The Save Babies Through Screening Foundation is a leader in the national grassroots advocacy movement, media awareness and actively participates on local, state and federal levels to improve newborn screening. The Foundation's goal is to see that every child born is screened successfully, effectively and comprehensively.
Wisconsin Newborn Screening Laboratory
The Wisconsin Newborn Screening (NBS) Laboratory home page is dedicated to promoting and encouraging the sharing of knowledge, communication and resources with health care agencies, families, and anyone else interested in NBS for the benefit of babies born in Wisconsin.
Wisconsin Sound Beginnings promotes and supports universal newborn hearing screening (UNHS) and follow-up services statewide.
Professional Societies
American Board of Genetic Counseling (ABGC)
The American Board of Genetic Counseling (ABGC) is dedicated to maintaining the highest level of professionalism in the field of genetic counseling. ABGC establishes standards of competence through accreditation of graduate training programs and certification and recertification of genetic counselors to advance the profession and protect the public. It is the credentialing organization for the genetic counseling profession in the United States and Canada.
American Board of Medical Genetics (ABMG)
The American Board of Medical Genetics certifies individuals and accredits training programs in the field of human genetics.
American College of Medical Genetics (ACMG)
The American College of Medical Genetics (ACMG) provides education, resources and a voice for the medical genetics profession. To make genetic services available to and improve the health of the public, the ACMG promotes the development and implementation of methods to diagnose, treat and prevent genetic diseases. The ACMG provides education and resources to medical genetics professionals. This website lists upcoming ACMG events, publications, education, resources and more.
American Society of Human Genetics (ASHG)
The American Society of Human Genetics (ASHG) is the primary professional membership organization for human genetics specialists worldwide. The Society's nearly 8,000 members include researchers, academicians, clinicians, laboratory practice professionals, genetic counselors, nurses and others who have a special interest in the field of human genetics.
International Society of Nurses in Genetics (ISONG)
International Society Of Nurses in Genetics (ISONG) is a global nursing specialty organization dedicated to fostering the scientific and professional growth of nurses in human genetics and genomics worldwide. ISONG's mission is to foster the scientific, professional, and personal development of members in the management of genetic information.
National Coalition for Health Professional Education in Genetics (NCHPEG)
National Coalition for Health Professional Education in Genetics (NCHPEG) is a Maryland-based nonprofit organization whose mission is to promote genetics education for all health professionals. NCHPEG's membership represents a broad range of professional societies, advocacy groups, corporate entities, and government agencies dedicated to the integration of genetically based health care into mainstream practice.
National Society of Genetic Counselors (NSGC)
The National Society of Genetic Counselor's (NSGC) Mission is to promote the genetic counseling profession as a recognized and integral part of health care delivery, education, research and public policy. Included is a searchable database of genetic counselors.
Transition to Adulthood
National Center on Secondary Education and Transition
The National Center on Secondary Education and Transition (NCSET) coordinates national resources, offers technical assistance, and disseminates information related to secondary education and transition for youth with disabilities in order to create opportunities for youth to achieve successful futures.
National Collaborative on Workforce and Disability
The National Collaborative on Workforce and Disability for Youth (NCWD/Youth) works to ensure that transition age youth are provided full access to high quality services in integrated settings to gain education, employment and independent living.
National Secondary Transition Technical Assistance Center
The National Secondary Transition Technical Assistance Center (NSTTAC) purpose is to assist states to build capacity to support and improve transition planning, services, and outcomes for youth with disabilities.
A peer-based program designed to support high school students with all types of disabilities to plan for their lives after high school. Resources include self-advocacy training, peer support, and one on one mentoring.
A research project working to develop strategies that schools, families, and communities can use to connect youth with disabilities to meaningful summer jobs and other community experience. This resource offers tips on supporting successful transitions from high school into the community.
Rehabilitation for Wisconsin, Inc (RFW)
Rehabilitation for Wisconsin (RFW) addresses the employment, residential, and community support needs of people with disabilities and economic disadvantages. RFW hosts a rehabilitation and transition conference each year.
Think College provides resources for students, families, and professionals about options for college for people with intellectual or other developmental disabilities.
Wisconsin Statewide Transition Initiative (WSTI)
The mission of the Wisconsin Statewide Transition Initiative (WSTI) is to improve the results for students with disabilities by providing staff development, support services and information dissemination to directors of special education, special educators, parents, youth and community agency providers on transition requirements and best practices for students with disabilities.
The Youthhood is a dynamic, curriculum-based tool that can help young adults plan for life after high school. Although the site addresses youth directly, it is intended to be used as a curriculum within a classroom, community program, or in any setting where adults are working with youth to set goals and plan for the future. The Youthhood includes informational content, interactive activities, and a wealth of other opportunities for youth to connect what's important to them to their learning experiences.
