Living with Special Needs: The Sibling Perspective

What’s life really like for the sibling of a person with special needs? Many people wondered. We did too, so we asked. In 2012, Massachusetts Mutual Life Insurance Company (MassMutual) sponsored the Easter Seals Siblings Study, which surveyed adults who have a sibling with special needs.

We learned adults who have a sibling with special needs strongly believe that their lives are enhanced by the relationship (even though family life growing up was often strained). They also admit to feeling financially unprepared to be future caregivers for their adult sibling with special needs and underestimate how much time and effort they’ll spend as caregivers.

Benefits of the Relationship

What contributes to family strain? Most of us immediately think about the time and money spent on medical attention, which limits funds for other family expenses and reduces quality time for other family members.

But what about the length of time it takes to get ready to go somewhere? The extra responsibilities that siblings assumed? The things that don’t get done or events that are missed because care for the family member comes first? We can understand how siblings might feel resentful of these extra duties, angry about missing a class field trip, and envious of friends who have easier, more adventurous lives.

During childhood, siblings may begin to recognize some benefits from their relationship with their brother or sister with special needs, but by adulthood, those benefits are more defined, less clouded by emotion. Benefits include becoming more tolerant, compassionate, understanding, patient, empathetic, sensitive, attentive and supportive.

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 now 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 special needs individuals 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 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.