Respite Care Notebook


CNF’s Respite Care Notebook was created for families who use respite care services or are thinking about it. Use the forms in this free Notebook to tell the respite caregivers about your child and his/her needs. They can use that information to provide the best care for your child. The Notebook is now available in hard copy and as a downloadable file. Caregivers Need Care Too!





Caring for our children requires lots of love and lots of patience. If your child lives with a special need, have you considered respite care? Families who have used respite care tell us that respite helps them “create a better balance” in their lives.

Respite care helps parents recharge, spend time with their partner, or with their other children. “Respite care expanded our circle of caring adults capable of providing high quality care for our son,” says one mother.

Respite can be a positive experience for your child. “Respite caregivers have helped my son participate in fun activities,” said one family. “…our son has a chance to meet new people and form other relationships outside his own family.”

Developed with families, CNF created the Respite Care Notebook for families who now use respite care services or are thinking about it. The forms in this Notebook are fully-customizable… allowing you to bring information about your child and his/her needs into one place. Respite caregivers will use that information to provide the best care for your child.

Some things to keep in mind:

  1. Respite care can be used for a few hours, several days, or even longer.
  2. You decide how to use respite, based on your family’s needs, services available, and coverage/costs.
  3. You fill out the forms in the Notebook that apply to your child. Skip the forms that don’t.

We want this Notebook to be useful for you and your child and we hope you will share your experiences with other families in your community.

As one family member told us, “Primary caregivers often don’t realize just how stretch[ed] and stressed they are until they get a real break and can look back.”

If you need someone to talk to, CNF’s free Peer Support program offers families a direct connection with an experienced, compassionate Peer Support Specialist to help navigate the journey of disease diagnosis, treatment, and management for a child living with a neurologic condition. More information.

If you have questions or would like a hard copy of the Notebook, email us [email protected].

CNF thanks GlaxoSmithKline for supporting the development and production of the Respite Care Notebook. CNF also thanks our advocacy partner, the Association for Creatine Deficiencies, for additional support of the Notebook production.

*See our full-page article about the Respite Care Notebook in the October 2017 issue of Neurology Reviews.
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