Check with your state Department of Disabilities, or state equivalent, for information about respite care, long-term care and state waiver benefit programs. Some states offer respite vouchers (reimbursement) for summer camps and childcare that offer short-term relief to the caregiver.
National Cerebral Palsy Support and Respite Care Resources
The Cerebral Palsy Research Network has a Wellbeing resource for parents and caregivers who are raising a child, adolescent, or young adult with cerebral palsy, or another disability. Check it out!
- Our MyCP forum– We welcome you to our community of clinicians, individuals with cerebral palsy, and parents and caregivers. Here you can share your experience with cerebral palsy, or raising a child with cerebral palsy, discuss the latest research, and give and receive support to other community members. Our forum is not indexed by Google (the conversations cannot be searched on the internet) and you may participate anonymously with an ID number.
Other resources:
- A Mother’s Rest (for Dads too!)– A nonprofit that coordinates low cost nationwide respite and retreat opportunities for parents and caregivers of loved ones with disabilities. Here is more information about the variety of respite retreats they offer, including couples and Mommy and Me trips for siblings.
- Mom2Mom– The online helpline in the US focused on mother’s of special needs children. It is staffed by mother’s of other special needs children 24 hrs a day, 7 days a week. Here is an article about Mom2Mom which is based in New Jersey, and in addition to offering emotional support to callers all over the US, also offers comprehensive information about resources in the state of New Jersey.
- The Catalyst Center- A website dedicated to supporting healthcare coverage for children with special medical needs. They have a family resource page with state by state listings of Parent to Parent organizations and more organizations dedicated to helping families navigate local resources.
- 211 United National Information and Referral Search
- Caregiver Sleep and Burnout- A great resource with information discussing compassion fatigue and sleep disorders that caregivers often experience and information on how to navigate through them.
Cerebral Palsy Pages on Social Media
- The Caregiver’s Living Room– A Facebook page hosted by mother and seasoned caregiver and advocate Donna Thompson
- Charisse Living with Cerebral Palsy– A Facebook page hosted by an adult woman and mother with cerebral palsy
For Siblings
- Sibling Support Groups
- ForeverSibs– Organization dedicated to supporting siblings with rare diseases or disorders
- Sibling Leadership Network-Connects siblings to social, emotional, governmental, and provisional supports across the lifespan enabling them to be effective advocates with their brother and sister, and to serve as change agents for themselves and their families.
For Dads
- Dadvocates– A page just for dad advocates of special needs children
Cerebral Palsy Support and Respite Care: Parent to Parent Organizations
Below is a list of state by state (in the US) parent to parent organizations that we have been able to find. Parent to parent organizations can be a wonderful resource for peer to peer support and information.
Alabama
Parent to Parent Organization:
Family Voices Alabama — Family Centered Care for Children with Special Needs
Alaska
Parent to Parent Organization:
Stone Soup Group — Assistance to families of children with special needs.
Arizona
Parent to Parent Organization:
Raising Special Kids — Phoenix, Flagstaff, Tuscon
Arkansas
Parent to Parent Organization:
California
Parent to Parent Organization:
Colorado
Parent to Parent Organization:
Connecticut
Parent to Parent Organization:
PATH Parent to Parent Help for Children with Special Needs
Delaware
Parent to Parent Organization:
Delaware Family Voices Resource for Parents of Children with Special Needs
District of Columbia
Parent to Parent Organization:
Florida
Parent to Parent Organization:
Florida Family Network for Disabilities
Georgia
Parent to Parent Organization:
Parent to Parent of Georgia: Supporting Families with Special Needs Children
Hawaii
Parent to Parent Organization:
SPIN Hawaii Special Parent Information Network, Support for Families with Special Needs Children
Idaho
Parent to Parent Organization:
Illinois
Parent to Parent Organization:
Answers for Special Kids (a.s.k.)
Indiana
Parent to Parent Organization:
Iowa
Parent to Parent Organization:
Kansas
Parent to Parent Organization:
Families Together Assisting Kansas’s Parents of Children with Disabilities
Kentucky
Parent to Parent Organization:
Kentucky Special Parent Involvement Network
Louisiana
Parent to Parent Organization:
Families Helping Families Support for special needs families
Maine
Parent to Parent Organization:
Maryland
A Pastor’s Place–“Teach parents the importance of taking care of themselves emotionally, physically, nurturing relationships with significant others and being knowledgable advocates for their children.”
Massachusetts
Parent to Parent Organization:
Michigan
Parent to Parent Resource:
Michigan Alliance for Families
Minnesota
Parent to Parent Organization:
Mississippi
Parent to Parent Organization:
Project Facess One-stop family support center linking families of children with developmental disabilities with their community
Missouri
Parent to Parent Organization:
Sharing Our Strengths (S.O.S.)
Montana
Parent to Parent Organization:
Nebraska
Parent to Parent Organization:
Nevada
Parent to Parent Organization:
New Hampshire
Parent to Parent Organization:
New Jersey
Parent to Parent Organization:
SPAN Statewide Parents Advocacy Network
New Mexico
Parent to Parent Organization:
Parent’s Reaching Out New Mexico resources for building a better family
New York
Parent to Parent Organization:
North Carolina
Parent to Parent Organization:
Exceptional Child Assistance Center:a private non-profit organization that is operated by and staffed primarily with parents of children with disabilities and special health care needs
North Dakota
Parent to Parent Organization:
Family Voices of North Dakota aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.
Ohio
Parent to Parent Organization:
Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.
Oklahoma
Parent to Parent Resource Organization:
Oklahoma Family Network informs and connects individuals with special health care needs and disabilities, their families and professionals to services and supports in their communities.
Oregon
OCCYSHN Oregon Center for Children and Youths with Special Health Needs works with communities to more effectively meet the needs of children and their families.
Parent to Parent Organization:
Unknown
Pennsylvania
Parent to Parent Organization:
PEAL Center The Mission of the PEAL Center is to ensure that children, youth, and adults with disabilities and special health care needs lead rich, active lives and participate as full members of their schools and communities by providing training, information, and technical assistance based on best practices to individuals, families and all people who support them.
Rhode Island
Parent to Parent Organization:
Rhode Island Parent Information Network
South Carolina
Parent to Parent Organization:
Family Connections provides you with information, support and hope for the future.
South Dakota
Parent to Parent Organization:
South Dakota Parent Connection connects families caring for children (birth to 26) with the full range of disabilities or special health care needs to information, training and resources in an environment of support, hope and respect.
Tennessee
Parent to Parent or Similar Organization:
Tennessee Disability Coalition An alliance of organizations and individuals who have joined to promote the full and equal participation of men, women and children with disabilities in all aspects of life.
Texas
Parent to Parent Organization:
Texas Parent to Parent is committed to improving the lives of Texas children who have disabilities, chronic illness, and/or special health care needs.
Utah
Parent to Parent Program:
Utah Parent Center works to help parents help their children, youth and young adults with all disabilities to live included, productive lives as members of the community.
Vermont
Parent to Parent Organization:
Vermont Family Network promotes better health, education, and well-being for children and families, with a focus on children and young adults with special needs.
Virginia
Parent to Parent Organization:
Parent to Parent Virginia believes in the innate strength of most families. Therefore, we have a philosophy that our services should affirm parents’ strengths and enable parents to obtain for themselves the services and supports their families need.
Northern Virginia CP support group-parent run: http://
Washington
Parent to Parent Organization:
PAVE a non-profit organization, exists to share information and resources with people whose lives are linked to children and adults with disabilities.
West Virginia
Parent to Parent Organization:
WVPTI Works to empower parents of children and youth with disabilities in their roles as parents, decision makers, and advocates for their children and to promote partnerships among parents and professionals.
Wisconsin
Parent to Parent Organization:
WI FACETS-Milwaukee
Parent 2 Parent-statewide
Wyoming
Parent to Parent Organization:
Parent Information Center Statewide parent center for families of children with disabilities
For more information about cerebral palsy support and respite care, download our free cerebral palsy tool kit.
