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.
And it can be particularly frustrating when it comes to lining up aid or assistance from government programs, as parent-child roles are often well defined, but sibling roles are not. Indeed, in a survey of families caring for a members with special needs, siblings generally reported having less choice and control than did other caregivers.1
If you are a sibling of someone with a disability and inherit the responsibility for their care, along with the care of other family members, 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 and federal government programs, community resources, Social Security benefits, private foundations, medical insurance and special education resources provide aid to those who are eligible. Consult city, county, state, and federal agencies for help with financial aid options for your dependent.
Government programs that may be available for dependents with special needs include:
- Supplemental Security Income (SSI) is a non-medical federal program that pays benefits to eligible dependents with special needs to help with basic food and shelter needs. Eligibility is based on the parent or caregiver’s income while the dependent is a minor. Once the dependent reaches the age of majority, eligibility will be based on their income, not their caregivers. For more information about SSI visit www.ssa.gov/ssi/. Information is also available by telephone, mail, or in person at an office. The toll-free number is 1-800-772-1213.
- Social Security Disability Income (SSDI) is a federal program that pays benefits to eligible adults who have a disability that began before age 22. Eligibility is based on their parent’s Social Security earnings record. For more information about SSDI visit www.ssa.gov/disability/. Information is also available by telephone, mail, or in person at an office. The toll-free number is 1-800-772-1213.
- Medicaid is a state-administered but federally reimbursed program that pays for needed medical care for eligible persons. Because Medicaid is a joint program between federal and state, various rules and regulations may vary by state. Eligibility for individual’s with special needs is generally determined using the income methodologies of the supplemental security income (SSI) program. Under a Medicaid Waiver, a state can waive certain Medicaid program requirements, allowing the state to provide care for people who might not otherwise be eligible under Medicaid. State Medicaid Waivers can help provide long term services and support to eligible dependents with special needs who need assistance with activities of daily living; such as eating, dressing, bathing, etc. Programs vary by state.For more information, contact your local Medicaid office or visit the Centers for Medicare and Medicaid Services at www.cms.gov. For more information regarding benefits provided by Medicare or Medicaid (Medi-CAL in California), visit www.cms.hhs.gov.
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 person. 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.
- Make sure medical care proxies and living wills for all family members of legal age are completed and in place. Otherwise, medical privacy laws will deny you access to your family member’s 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 sibling with special needs 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.
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This article was originally published in March 2015. It has been updated.
1 University of Illinois at Chicago Family Support Research and Training Center, “Sibling Caregivers Experience Less Choice and Control,” Fall 2016.
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.