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, as well, their lives can be even more demanding — hence the nickname “club sandwich” generation.
A 2012 study by Easter Seals, commissioned by MassMutual, found 23 percent adults assume or will assume the role of primary care provider for their adult brother or sister with a disability. While most respondents (80 percent) said their disabled sibling had a positive and unique impact on their life, they noted it is not always easy. And many indicated they did not feel emotionally or financially prepared for the demands of being a caregiver. 
If you are a sibling of someone with a disability and inherit the responsibility for their care, you may want to consider the following:
Social Security for Elders and Children
Take a look at what the Social Security Administration (SSA) 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, too, to take care of you. 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.
- And, importantly, get your own financial house in order. Caregivers who are busy raising their own children, working full time job, helping their aging parent and tending to the needs of a disabled sibling often make their own financial security a low priority, said Steve Thompson, a financial advisor with Skylight Financial Group in Cleveland, Ohio, who is trained to work with special needs families. “You have to be sure you’re saving for yourself and protecting yourself from risk exposure, too,” he said. “Make sure you are doing the things for yourself that you’re trying to fix for everyone else.”
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.
More from MassMutual…
1 Easter Seals, “Sibling Study” 2012
For information about SSI go to http://www.ssa.gov/ssi/. For information about SSDI go to http://www.ssa.gov/pgm/links_disability.htm. Information is available by telephone, mail, in person at an office. The toll-free number is 1-800-772-1213.
The information provided is not written or intended as specific tax or legal advice. MassMutual, its employees and representatives are not authorized to give tax or legal advice. Individuals are encourage to seek advice from their own tax or legal counsel.