Adult Sibling Toolkit: A Planning Guide

Sponsored by The Arc of Snohomish County and
the Washington State Developmental Disabilities Council

A guide for siblings of adults with intellectual and developmental disabilities in Washington State

adult sisters by the lake


Many siblings feel a great deal of anxiety when it comes to planning for their sibling’s future.

What will you need to know? What will your legal and financial responsibilities be? Many people find that making a plan with their family helps to alleviate some of that anxiety.

Here’s how this guide can help:

  • Gather important people. Sit down with your parents, sibling, and other family members or important support people.
  • Be honest. Talk about and decide what everyone’s role should be. You might want to identify one person who will take the lead and be the “go-to” support person for your sibling, or you might want to share responsibilities evenly. Try to be honest about what you are willing and able to do, and allow others to express themselves, too.
  • Gather paperwork. Find important documents like guardianship paperwork, your sibling’s identification, medical information, etc. You can keep copies of them or identify some way to keep them organized and know where they are. If documents are missing, make a plan to get them.
  • Be thorough. Go through the guide together as a family and support network. You don’t have to do it all at once, but try to fill out everything to the best of your ability. It might help to set a date once a year to go through and update information.
  • Identify support. How did it feel to start this process? Probably a bit overwhelming, but hopefully you will feel better having a plan. Now’s the time to identify what support you need as a sibling. You can find resources in each section of this toolkit to help get you started.

Get Your Copy

Download and print the full 32 page planning guide as a single document, or select and print each section separately.

Adult Sibling Toolkit (Complete Guide)

Section 1: Citizenship & Advocacy
Understanding inclusive community opportunities and steps to become a successful self-advocate.

Section 2: Community Living
There are many different options for people with disabilities when it comes to a place to call home. What will work for your sibling will depend on a variety of factors, including their preferences, care needs, and support services.

Section 3: Employment
Many adults with disabilities enjoy and find employment to be beneficial to their lives. Employment can offer someone structure and routine, more opportunities to socialize, and the feeling of purpose and value. Businesses also benefit from adding individuals with disabilities to their workforce. Identify your sibling’s employment interests, work history, and resources for employment services.

Section 4: Healthy Living
Managing and accessing health care and staying well. Record medical history, medications, provider contact information, mental health, behavioral health, developmental health, wellness, and nutrition.

Section 5: Safety & Security
Staying safe and secure, dealing with emergencies and ensuring well-being, legal rights, alternatives to guardianship, and guardianship.

Section 6: Social & Spirituality
Building friendships and relationships, leisure activities, personal networks, and faith community. Identify who your sibling likes to spend time with, what they like to do, and how to build and maintain important relationships.

Section 7: Support & Services
Many individuals with disabilities receive benefits from a variety of sources. It can be complicated to keep track of all of these services and how they are accessed.

Section 8: Support for Siblings
Participating in support groups is a great tool to learn, share and connect with other families in the same situation.

Section 9: General Resources
Services and resources for siblings with intellectual and developmental disabilities.



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