Living with special needs: The sibling perspective

Siblings often have the longest relationship of their lives with one another. And when a sibling has a special need or disability, that relationship may often evolve into a caregiving role, especially as lifespans grow and people outlive their parents.

Such situations can present challenges, especially financial ones.

In a survey of families caring for a members with special needs, siblings generally reported having less choice and control than did other caregivers. They also generally reported lower incomes, with 76 percent of sibling caregivers making less than $50,000 per year as compared to 66 percent of other types of family caregivers.1

While many siblings anticipate becoming the future caregiver, they often feel unprepared to take on this role. This is because they are not included in the planning process nor decisions for the future care of their sibling with special needs.

Common experiences among siblings

Having a sibling with special needs can have a profound impact on life. Many siblings of a loved one with special needs tend to mature more quickly than others who have a brother or sister without special needs. Earlier development of emotions related to compassion, patience, and empathy is also common. A broader awareness of emotions can also include feelings of jealousy, loneliness, and even resentment toward their sibling with special needs during childhood.

Siblings learn to see life from different perspectives, which help them make personal and professional decisions like choosing friends, a career path, where to live (geographically and type of residence, especially if they’ll be caring for their sibling), whether or not to marry or establish a business with someone, and what qualities to look for in a spouse or business partner.

Mary Anne Ehlert, a financial advisor in Lincolnshire, Illinois whose younger sister had cerebral palsy, recalls the letters she recently found from her mom, written years before her mother had suffered a cognitive decline.

“She apologized and said she was really sorry that she had cheated me,” said Ehlert, who advocates for special needs families. “Reading those letters as an adult, I can tell you that I feel totally blessed to do what I do and I do it because of my sister. I look back on my life and know that I was really lucky.”

Growing up, she admits, she didn’t always feel that way. It took time, maturity and a little perspective.

Due to their life experience, the brothers and sisters of individuals with special needs are often generous with their time and money when it comes to helping others. They also believe their children benefit similarly by having an aunt or uncle with special needs.

Being financially prepared

From an emotional and intellectual standpoint, most siblings feel ready for caregiving since they've lived with and cared for their sibling with special needs while growing up. But their confidence declines when the topic of finances is considered. If you’re in a similar situation, you may want to consider:

  • Talking to your parents. Do they have a financial strategy? If so, be involved in annual reviews and future planning.
  • Creating your own strategy. Ensure it doesn't duplicate or work against steps your parents may have taken. A Financial Professional and an attorney with experience in serving families with special needs can help.
  • Speaking with your siblings (or other family members) about finances. Perhaps they can contribute.
  • Brainstorming future scenarios you may face. What are the financial implications? How might you prepare?

Caregiving time and money

Though some may think so, living with a sibling with special needs isn't enough to know how difficult and time consuming caregiving will be. It’s easy to watch from the sidelines, imagining we’d be better at time management, advance planning, and balancing all aspects of life. In reality, those who have assumed care know this truth: until you've done it, you can’t know for sure what it takes.

Before assuming full responsibility, it may help to become involved in care now, and as often as possible, so you can be better prepared when the time comes. Getting involved early can help you not only begin to build your support community (friends, family, civic and religious organizations, disability-related organizations, others who have siblings with special needs, etc.), but also understand that more people will say they’ll help than will actually help, especially on an ongoing basis or at a moment’s notice. It can also give you an opportunity to learn about resources available to you now (government benefits and waivers, job training, housing options, skilled in-home personal care providers, etc.) so you’ll be prepared later.

By doing some of the upfront pre-planning to be a future caregiver of a sibling with a disability, you can help ease the responsibility and the feelings of stress that uncertainty about the future can bring.

Learn more from MassMutual…

Special care solutions

When a trust might help

Financial advice for special-needs families

This article was originally published in March 2015. It has been updated.

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University of Illinois at Chicago Family Support Research and Training Center, “Sibling Caregivers Experience Less Choice and Control,” Fall 2016.