I Am The Ghost of Your Future
A Letter to Special Needs parents from the neurotypical sibling.
No one likes to talk about what is going to happen when I am no longer here. Who is going to take care of my child with special needs when I am no longer able to? I know what you are thinking…I am going to live forever…my child is young…I can think about this later. You need to have this conversation and this is why.
Imagine, one day you “come-to” and you realize that you are in a hospital bed. You don’t know how you got there and have no clue what happened to you. You are hooked up to machines and in the ICU. You then spend the next six weeks in and out of the hospital and skilled rehab to find yourself in hospice. This is what happened with my father. He was my brother’s legal guardian.
Having your parent in the hospital is stressful enough. His health care proxy, power of attorney, and Will documents were completed. I, however, had no idea where they were. I have an older brother with autism and intellectual disabilities and his guardianship had to be transferred to me quickly. I live 2200 miles away.
Luckily for me, I own my own business. I took the time that was needed. It was very difficult to manage the business from 2200 miles away, as well as staying in the hospital most days and managing all other affairs. Imagine your neurotypical sibling is an adult. He/She has a great job and they get this phone call. Can they leave their place of employment for 6-8 weeks to deal with these affairs-property, finances, and their sibling?
Please plan for the future. At the minimum, have your power of attorney, health care surrogate (proxy in other states), and Will completed. Please let the neurotypical sibling(s) know they are completed, who you have assigned to what role, and where the documents are stored. If guardianship or guardian advocacy is needed for the individual with a disability, you may choose to do co-guardian. Teach your neurotypical child how to advocate and not be thrown “into the fire.” Figure out who is able AND willing to take on this role. These are things that I wish were done ahead of time so I could just focus on my father.
My father did “flunk” hospice, as he puts it. He is still alive but has dementia. My brother has moved to be closer to me. It all worked out, but it took a year and a half. I know legal fees are expensive, but so is no income coming in for the neurotypical sibling when you have to take a lot of time off to help out. This is the neurotypical sibling of your future begging you to have a plan. #haveaplan
*This is not intended to be legal advice*
Cheryl Albright is the owner and founder of Soul To Soul Yoga and All Ages Therapy Services based in Bradenton Florida as well as a special needs sibling.
URL: www.soultosoulyogasrq.com & www.specialsib.com
Links mentioned in this article or video:
• Crisis Criteria for Agency of Person with Disabilities(Florida)
• Building a Resource Manual for Future Caregivers
• “Instruction Manual” for Your Child with Special Needs
• Why Siblings are too Important to Ignore
• Guardianship & Special Needs Trusts
• Financial Planning: For Those Who Are at the Starting Line
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- Siblings Are Special, Too
- Engaging Siblings to Build Social Skills: A Relative Solution to a Complex Problem
- Getting Real about Resentment and Finding Small Ways to Make a Big Difference for Siblings
- How to let Young Siblings Know you Care
- What Siblings would like Parents and Service Providers to Know
This post originally appeared on our July/August 2020 Magazine