UCEDD
University Center for Excellence in Developmental Disabilities

Taking Care of the Family

In Wisconsin, there are many ways to support families with children with special needs. As you consider your child’s needs and what would be a good fit for your family, consider both formal and informal supports available in your community. If a formal support is not available due to a waiting list, consider what informal supports could help you and your child.

FAMILIES HELPING FAMILIES

It can be helpful to get to know other families who have children with similar health issues. Hospitals, clinics and family resource centers sometimes host parent support groups. Contact your Children’s Resource Center to find out if there are support groups meeting in your area.

Below are some family-to-family organizations that can help:

Connecting Families is a network of culturally and linguistically responsive peer support in the state of Wisconsin for families of children and youth with special health care needs (CYSHCN). We help families connect with other families through our network and other community partners.
Email: connectingfamilies@waisman.wisc.edu

Parent to Parent of Wisconsin is a statewide network of families who support each other on the journey of parenting children with special needs by providing a one-to-one connection with another parent who has a similar experience. Trainings are provided for parents who feel ready to become Support Parents.
833-361-6300

Family Voices of Wisconsin provides information, training and leadership opportunities so that families can be informed and effective partners in their child’s care and in influencing the systems that support them.
608-220-9598

DEFINITION

What are Informal supports? (also called natural supports)
Informal supports are those supports available through your family or your community that may be available for any child regardless of special need.
Examples include:

  • extended family
  • friends and neighbors
  • faith groups

What are Formal supports? (also called services)
Formal supports are established programs run by an agency or organization that assist families to care for their child or youth with special needs.
Examples include:

  • school-based programs
  • clinic or hospital based programs
  • state or county administered programs
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FAMILIES HELPING FAMILIES (CONTINUED)

Wisconsin Family Ties is a statewide, parent-run nonprofit serving families that include children with social, emotional and behavioral needs. Wisconsin Family Ties provides advocacy, information, training, and support for families and professionals through parent peer specialists who are available throughout the state.
800-422-7145

There are diagnosis-specific organizations with local or regional chapters. These organizations can connect you to other families and can provide support and resources.
Examples include:

LEARN MORE

Families with children who are deaf/hard of hearing/deafplus:

There are also organizations that support families who care for children with and without special needs.
Examples include:

TIME FOR YOURSELF AND YOUR RELATIONSHIPS

Having a child with special needs can take a lot of time and energy and have an impact on the whole family. Remember, in order to take the best care of your child, you need to take time for yourself  !

Taking time for your spouse, your partner, your other children and friends is also important. Carving out time to get away (e.g., taking a walk or going to see a movie)can create balance in your life and positively impact your ability to care for those you love. Information on caring for yourself as a caregiver can be found  at:

Family Caregiver
800-445-8106

SIBLINGS

Siblings of children with special needs sometimes need additional support. There are groups that can connect siblings to siblings from different families and to helpful information.

 

Younger brother giving sister a hug and kiss on cheek

DEFINITION
“Care coordination is a process that facilitates the linkage of children and their families with appropriate services and resources in a coordinated effort to achieve good health.”
American Academy of Pediatrics Policy Statement
November 2005

 

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SERVICE AND CARE COORDINATION

Some programs provide care coordination. In these programs, a case manager or service coordinator will assist you to identify and connect with community supports. Examples include the Birth to 3 and the Children’s Long-Term Support (CLTS) Waiver programs. Your child’s doctor or other clinic staff may also assist your family in coordinating your child’s services and supports.

While some families have this type of help, it is common for parents to provide care coordination for their own child. This can be an intimidating and overwhelming experience for families; however, resources exist to help minimize these feelings.

One way to stay organized is to start a care notebook. A care notebook is a system for organizing medical, school and other records, appointments,providers and notes.
An example of a care notebook is available at:

Building Your Care Notebook

Some families find it helpful to prioritize their next steps or goals. The GPS (Getting Parents Started) Form in Appendix A is a simple tool to help families work on their goals.

CARE MAPPING

Care Mapping is a family-centered process that visualizes a family’s strengths and communicates both the big picture and the small details of all the resources needed to support a child and their family. Your Children’s Resource Center (CRC) offers offers trainings on the importance of creating a care map for your family and on “how-to” create a care map.
Find your CRC.

CONFERENCES AND TRAININGS

We all help ourselves by learning more. Conferences and trainings allow you to meet other families and provide an opportunity to learn new information that can help your child. Several of these organizations offer scholarships or provide trainings at no cost to participants. There are several good online resources to keep families updated on trainings and other learning opportunities. One example is the monthly Family Engagement Newsletter.
For the latest issue go to:

Below are some examples of conferences and training opportunities:

  • Waisman Center Days with the Experts are six annual educational events focused on autism, cerebral palsy, cochlear implants, Down syndrome, Augmentative and Alternative Communication (AAC), and Fragile X syndrome that feature advances in research, clinical services and self-advocate/family panels.
  • Autism Society of Greater Wisconsin (ASGW) has an annual statewide conference and local affiliates have workshops and training for parents and families.
  • The Circles of Life Conference is for families of children with disabilities and special health care needs and the professionals who support them.
  • Did You Know? Now You Know! trainings from Family Voices of Wisconsin provide information on how to navigate health care and community supports.
  • Children Come First Conference is an annual conference for families and providers caring for or working with children with mental, emotional or behavioral needs.
  • Endless Possibilities Conference invites families and professionals who support students with disabilities to learn and grow together. We encourage open dialogue between families and professionals to discuss positive solutions for all our students with special needs in Wisconsin

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WHERE FAMILIES CAN LEARN MORE

 

LEADERSHIP TRAINING

Leadership training can help you get more involved in your community and can assist you to become a more effective advocate for your child and other children as well.
Some leadership training opportunities in Wisconsin include:

Mom, Dad and daughter is in a wheelchair.
  • Partners in Policymaking (a multiple weekend training for individuals with disabilities and parents who have children up to age 21).
  • Advocacy for Change is a one-day advocacy skills and strategies training for parents/family members.

RESPITE CARE

Respite is a service which provides relief from caregiving responsibilities.
In most cases families will either have to pay for the services or have another source of funding, which could include the Children’s Community Options Program (CCOP) or Children’s Long-Term Support (CLTS) Waiver.
For information about respite care in Wisconsin, contact:

Respite Care Association of Wisconsin has funding/caregiving grants if you are waiting for county funds or don’t qualify for county funding. They also provide a searchable database to help locate respite and on-line training for family or friends to learn how to provide respite.

There is also a Medicaid benefit called personal care services. For an eligible child, this service includes a person who comes to the family home and can help with daily chores, such as bathing, dressing, toileting, and feeding. Some families experience this help as a break or respite from caregiving.

 

DEFINITION

What is Respite Care?
“Respite is temporary relief for caregivers and families who are caring for people with disabilities or other special needs such as chronic or terminal illnesses…”
Respite Care Association of Wisconsin

Two dads holding their children on their laps.
Children going down slide (top picture) child with toys (bottom picture)

RECREATION/COMMUNITY ACTIVITIES

Participating in recreational and other community activities is important for all children, including children with special needs. While your child may need extra support to take part in an activity, most schools and other sponsoring organizations can work with you to find ways for your child to fully participate.
Examples include:

  • play groups
  • faith-based groups and activities
  • scouts
  • clubs and sports at school
  • YMCA

There are camps, community programs and activities that are specifically set up for children with special needs. Your CYSHCN Regional Center can provide contact information for programs in your community.
Some examples include:

LEGAL ASSISTANCE

Legal questions may come up as you consider care and services for your child. Sometimes your health care benefits or the rights of your child may be unclear and getting legal help may be necessary. Below are organizations available to assist you. There may be a fee associated with this assistance.

  • ABC for Health (Advocacy and Benefits Counseling for Health) is a public interest law firm dedicated to ensuring health care access for children and families, particularly those with special needs. They can provide health benefits counseling on health coverage and benefits, and in certain situations, legal representation to families experiencing low income.
    800-585-4222
  • Disability Rights Wisconsin is a private non-profit organization that defends the rights of individuals with disabilities throughout the state.
    800-928-8778
  • Wisconsin Judicare is a law firm that provides legal assistance to individuals, including those with low income, living in north
  • Legal Action of Wisconsin is a law firm that provides legal services, through staff and volunteer attorneys, to families having low income. They serve 39 southern Wisconsin counties in the areas of housing, consumer, family, public benefits and drivers’ licenses and expungement law.
    855-947-2529
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