Support is closer than you think:
SBWIS families need support from others going through similar life experiences. Please connect with the group in your area to learn more about what they offer. These groups are not part of Spina Bifida Wisconsin. They are independent of our organization and are run by area parents willing to help you.
Spina Bifida Family network:
This parent supported network connects Madison area families with each other through Facebook interactions. Click HERE and like their Facebook page. This is not a Wisconsin charitable 501c3 non-profit organization.
Spina Bifida Superheroes of Wisconsin:
This is a support group for parents of kiddos who have Spina Bifida or those who have Spina Bifida themselves and live in Wisconsin. Most members reside in the western counties / Marshfield clinic area. Click HERE and send a request to join this private group.
Fox Valley Spina Bifida Support Group:
This parent group hosts 4 support group meetings per year in Appleton, WI and occasional social events for members. Click HERE and like their Facebook page. This is not a Wisconsin charitable 501c3 non-profit organization.
Numerous other Facebook groups exist to provide you with information and support, we’ve listed a few here for you to search, like and follow:
Redefining Spina Bifida - comprised of writers, advocates and photographers working to redefine the world’s perception of SB
Spina Bifida Awareness - merchandise available to support your SB Warrior
Spina Bifida of Northern Wisconsin, Adults Born With Spina Bifida, Spina Bifida Warriors, Chiari Malformation Support Center, Mature Adults with Spina Bifida, Hydrocephalus Association, Hydrocephalus/SB Adult Support Group, United by Spina Bifida, Wisconsin Pediatric Hydrocephalus Foundation, Bowel Management for Spina Bifida, Parents of kids with AFO, SMO & KAFO, Shoes for AFOs, AFO Shoe Exchange, United by Spina Bifida and SB: A Parenting Support Network
RESOURCES ARE AVAILABLE AROUND WISCONSIN:
The first place to contact when your baby is born and for resources around WI:
Wisconsin Department of Health Services is the first place to connect with after your baby is born. A child with spina bifida may be eligible for support and financial assistance from different state funding programs, and programs specific to your county of residence.
Click HERE to visit their website for more valuable information and click HERE for their Wisconsin Wayfinder Children’s Resource Network - one stop shopping for answers to your questions.
Milwaukee Area Adult Peer Support:
The Froedtert & Medical College of Wisconsin Spinal Cord Injury Peer Mentor Program meets every Tuesday from 6 to 7:30pm at Froedtert Hospital and their Facebook page is open to people with spinal cord injury or those who are associated with the spinal cord injury community. The Facebook page gives us an opportunity to share education related to spinal cord injury, communicate special events and share experiences, challenges and successes in your lives. Sharing information and life skills can promote health, wellness and adjustment for those affected by spinal cord injury.
Friend requests will be considered regardless of level of injury, demographic or facility of rehab. We may not accept your friend request if your profile does not indicate an affiliation with a spinal cord injury, persons living with spinal cord injury, support systems for spinal cord injury, caregivers or healthcare providers.
Contact Michelle Wesline for more information: 414-805-2785 or michelle.wesline@froedtert.com
Madison Area Support Group for ADULTS
This group meets on the 2nd Monday of the month for peer support, they also meet socially in the community. FREE adaptive bikes and kayaks are available to members to borrow. For more information visit their website by clicking HERE
Home care
Inviting someone into your home to assist in care-giving for your family member with spina bifida can be scary. Bright Star Care serves families across Wisconsin and SBWIS confidently recommends them because of their commitment to quality care services. Bright Star Care is accredited by The Joint Commission assuring safety standards, training, privacy and information management and emergency management plans. You may be new to this process of planning for home care, so Bright Star developed a guide .
Bright Star Care is defined by core values of Compassion, Integrity, Inspiration, Excellence, Diversity and Generosity. They offer “peace of mind” to families, clients and team members by providing a higher standard of care. The answer is Yes.
Bright Star home care services include: Hands on care: bathing, dressing, grooming, feeding, toileting, wound care, Inside home care: companionship, cooking and cleaning. Outside the home: transportation to appointments and errands, Assistance with medication reminders, Live-in caregivers.
Initial plan of care and case management re-assessment visits every 90 days, 24/7 live answer for personalized responses to all concerns, personalized plan of care written by a Registered Nurse Case Manager and flexible scheduling with no minimum and only 24 hour change or cancel notice.
Find your local Independent Living Center - click HERE
The WisTech, WisLoan and Telework programs offer
loans for assistive technology, home modification, vehicle adaptations or accommodations for employment. The programs are open to Wisconsin residents of all ages who have a disability. There are no income requirements and individuals are not required to exhaust personal or public funding. These programs consider individual circumstances, including reasons for poor credit, loans are tailored to each applicant. Applications are completed through Independent Living Centers (see map and contact information above) or email the state’s loan coordinator at dhswistech@dhs.wisconsin.org
Read more about it, click HERE
Find your county's ADRC office:
Wisconsin Counties have Aging and Disability Resource Centers that are the first place to go to get accurate, unbiased information on all aspects of life related to aging or living with a disability. ADRCs are friendly, welcoming places where anyone - individuals, concerned families or friends, or professionals working with issues related to aging or disabilities - can go for information tailored to their situation. Click HERE to be re-directed to the site that serves your county.
Need help? Simply dial 2-1-1 to access family, health and social service resources.
Serving Southeastern Wisconsin 24/7 with free, confidential, multilingual resources and information. You can also click HERE to chat or search their online resource directory.
Paul’s Party
The mission of Paul’s Party is to fund FUN for kids with physical disabilities. Paul was a fun-seeker and we know how difficult it can be to provide recreational opportunities for kids who use wheelchairs or even just can’t participate in the same way as their peers. So we fund sled hockey equipment, track racing chairs and equipment, hand bikes, summer camp scholarships…pretty much anything recreational and fun (and likely expensive).
Inquiries and requests for financial assistance can be made by emailing paulspartyinc@gmail.com
Go Baby Go Milwaukee!
This program provides free customized motorized cars for children with special needs to help them gain independent mobility. Eligible kids are ages 9 months to 5 years old, able to visit Milwaukee once for measuring and once to receive the car. For more information and FAQs click HERE
Variety the children’s charity of Wisconsin is
dedicated to enriching the lives of children with physical or developmental special needs and their families. Variety serves children 21 years of age and younger who have a diagnosed or demonstrated physical or developmental special need. Children must reside in the State of Wisconsin to be eligible for services. Variety provides family and equipment grants and wonderful discover program events throughout the state. For more information click HERE or visit www.varietywi.org
A Kid Again
This Ohio based resource is expanding enrollment to Wisconsin families and spina bifida is a qualifying condition for their services. Eventually we can expect Wisconsin Adventures, but for now, until enrollment numbers reflect a need and interest, you can enroll and participate in their FREE Adventure Boxes 4 times per year that are mailed right to your home! Enroll once and enjoy their services until your child reaches the age of 20 years old. For enrollment and more information about their Adventure Boxes click HERE.
Logan’s Heart and Smiles
Logan’s Heart and Smiles is a non-profit organization dedicated to improving homes and inspiring hope to families with children with special needs across Wisconsin. When families do not have the substantial resources required to make necessary safety and accessibility modifications to their homes, they often have nowhere to turn for help.
It is our mission and honor to help families in need by providing reduced labor costs to help ease the burden these families face.
Through the generous support of sponsors, donors and volunteers who give their time, resources, and skill, we are able to provide families with safer, accessible environments to support the needs of their children. One of our largest sources of funding each year is our Annual Fundraiser. We use the proceeds from this event and donations throughout the year to purchase the tools and materials necessary to construct wheelchair ramps, safety fences, enlarged doorways, hand rails, bathroom modifications, and other custom home improvements. Click HERE for information.