5 Things Siblings of Adults With Developmental Disabilities Should Know


I am the sister of an adult with a disability, and the oldest in my mom’s family. I already know it will be my responsibility to take care of my sister, April, once our mother leaves earth. I am not looking forward to losing our mother, but I am well-prepared. As an ex-family resource coordinator and licensed future care planner for individuals with disabilities, I learned the importance of being involved in April’s life. Here is a short list of things siblings of adults with developmental disabilities should know about their lives.

1. Your sibling’s routine.

It is important to know your sibling’s routine, because it is a part of their daily life. Periodically ask your parents what your sibling likes to do throughout the day. Having a schedule with a time frame will benefit you tremendously in case of an emergency. It also helps if you or your parents are in an unexpected situation and a close friend or relative has to take your place temporarily.

2. Your sibling’s likes and dislikes.

Knowing your sibling’s likes and dislikes will help in avoiding conflicts. It takes time to get to know what someone enjoys. If you are no longer living in the household with your sibling, it is best to have a log of things that will comfort them. If they hate the color red, you need to know. If they enjoy a specific television show or music genre, you need to know. If they hate/love certain food or dislike a specific person – you need to know!

3. Medical information.

It is critical to know your sibling’s medical information — the doctors they visit, their medication, allergies, medical equipment, and medical directives. You need to know where to purchase products, their service providers’ information and how to reach their case manager.

4. Personal information.

It’s essential to know where to locate your sibling’s social security number and their parents’ information, especially if you have a different mother or father. Write down your sibling’s clothing size, shoe size, and products they use daily. Don’t forget to keep up with activity centers or camps – they have friends too and staying in contact with them is important to their social life.

5. A future care plan for your sibling.

We don’t know what the future holds; however, we can take care of ourselves and make adjustments. We have survival skills that we’ve learned throughout our life; however, our siblings may need help in that area. Your parents should let you in on the financial arrangements for your sibling such as special needs trust, housing, direct care support, case management, waivers, insurance and burial information. If you work on the plan with your parents and your sibling, the process will be easier. Keep the decisions person-centered at all times. Do what you think is in the best interest of your sibling from their point of view, not yours.

After collecting all this information, write it down/document it and save it to USB, cloud, folder or print it and keep it in a safe place or with a close friend. Remember to keep a list of relatives or close friends you can count on to stand in your place in case of an emergency, and don’t forget to tell them where the information is located.

Follow this journey on Alisa’s website.

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