Nowadays, many couples find themselves caring for both their children and their aging parents, “sandwiching” them between caregiving responsibilities. When these sandwich generation couples are required to care for a sibling with a disability, their lives can be even more demanding — hence the nickname “club sandwich” generation. If you are a sibling of someone with a disability and inherit the responsibility for their care, you’ve added another level of duties. If you feel like you’re in a similar situation, you may want to consider the following:
Social Security for Elders and Children
Take a look at what the Social Security Administration (SSA)1 has to offer. If your parents aren't already collecting Social Security retirement benefits, talk with them — and with a tax professional — to determine the best age to begin those benefits. A good starting place for additional information may be the Social Security Administration website; while you are there, browse to see what other benefits your parents may qualify to receive. The Benefits Eligibility Screening Tool may be useful, along with information about disability benefits, which may apply to your parents and your sibling with a special need.
State Waiver Programs
Find out what waiver programs your state offers. Call to talk with a waiver program coordinator or search your state’s website for “Home and Community Based Services waivers” or “Katie Beckett waivers,” which provide benefits when a person is cared for in the home rather than an institutional setting.
A Financial Professional who’s experienced in helping families with special needs can also help you learn about waiver programs and other Social Security benefits.
Letters of Intent
What if a time comes when you can’t care for your parents, your child or your sibling with special needs — either temporarily or permanently — and someone else needs to step in to help? Make that transition easier by completing a Letter of Intent for each of your parents, your sibling and your child. This document provides the personal, medical, educational and social information a caregiver needs: doctors’ contact information, lists of prescriptions, allergies, favorite foods and more.
Get and Stay Organized
Searching for…well, anything can be time consuming and stressful. So organizing the information you need to take care of your loved ones is more than worth the effort. Here are some tips:
- Devise a filing system for paperwork (medical records, social security statements, tax-related material, etc.) that will work best for you.
- Keep a list of social security numbers and online passwords handy, but secure.
- Complete medical care proxies and living wills for all family members of legal age. Otherwise, medical privacy laws will deny you access to patient information and prevent you from making decisions regarding their care.
- File contact information for doctors, suppliers, schools, etc. in an easily accessible location
Take Care of Yourself
- Remember to keep yourself healthy. Eat well and reduce stress by finding personal time to relax. Build your network of support that includes friends, family and/or paid caregivers. Join a sibling support group. When you’re feeling stressed, take the steps necessary to prevent/minimize the stress and relax.
If you are living in the “club sandwich” generation and supporting your spouse and children, your parents, and a sibling with special needs, know that there are resources to help you and your family plan for the future.