The FAMILY CARE TOOLKIT created by the NDSC, with the support of the Global Down Syndrome Foundation, is a toolkit created for the caregiver. Emergencies happen. Vacations and respite are sometimes needed. It is essential to have important information in one place when a caregiver comes in to care for a person with Down syndrome, as well as other members of the family. The Parent guide shows you how to complete the toolkit. The rest of the toolkit is divided into 6 sections – Home, Family, Daily Living, Medical, Resources, and Emergency- which includes everything from how to use remotes to emergency medical consent forms.
Adult siblings are a key part of their brothers’ & sisters’ lives, and we recognize how important those relationships are. In addition to our Adult Sibling Toolkit, we offer many workshops at our Annual Convention, perfect for adult siblings and caregivers.
Download the documents below, or contact us at info@ndsccenter.org to purchase a toolkit and binder for just $25. One book per family, please.
NDSC’s Adult Sibling Toolkit
Updated in June 2022!
Created for adult siblings, this toolkit is designed to jump-start conversations with parents about becoming more involved in their brother or sister’s life. Siblings and other key individuals can use this information to be effective advocates, assist their parents with their brother’s or sister’s care, or step in as the primary caregiver after their parents are no longer able. Download the toolkit contents below, or contact us at info@ndsccenter.org to purchase a toolkit and binder for just $25.
Adult Sibling Toolkit: Getting Started
How well do I really know my brother? Do I have all the information I need to provide the very best post-parental care for my sister?
Adult Sibling Toolkit: Social
Who are his friends? What do they like to do? Does she have a boyfriend? Does she understand the meaning of intimacy and a healthy relationship? How does he get from here to there and everywhere?
Adult Sibling Toolkit: Health
What are her current health conditions? Does he take any medications? Where does he get his prescriptions filled? How often does she need to go to the doctor? Which specialists does she see?
Adult Sibling Toolkit: Home
Where does he want to live when Mom & Dad can no longer be his primary caregivers? What day-to-day activities does she need help with? Can he make his own meals? Are there any restrictions to his diet?
Adult Sibling Toolkit: Employment
Does he work? Who is his boss? Who are his co-workers? Does she have a job coach? Does he volunteer?
Adult Sibling Toolkit: Legal/Financial
Does he have a legal guardian? What are the options? Do Mom & Dad have a will? Do they have a special needs trust set up for her? Where can I find these important documents?
Adult Sibling Toolkit: Government Benefits
What government benefits does she receive? SSI, SSDI, Medicaid? What about a waiver? If he wants to live with another sibling or me, will he have to move to another state? How will this affect his benefits?
Adult Sibling Toolkit: Resources
Are there organizations or websites that will help me when I have more questions?
