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Living with special needs: The sibling perspective

Shelly  Gigante

Posted on July 19, 2023

Shelly Gigante specializes in personal finance issues. Her work has appeared in a variety of publications and news websites.
Special needs sibling perspective
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Describe the emotional challenges and rewards of becoming your brother's or sister’s caregiver. 

Provide a checklist of ways to get your financial house in order when you assume the role of caregiver for a sibling with special needs. 

Explain why it is important to talk candidly with your parents about financial planning and to set expectations. 

Siblings often have the longest relationship of their lives with one another. But when your brother or sister has a special need or disability, that relationship may evolve into a caregiving role.

Such situations can present challenges, both emotional and financial.

Depending on how well your parents planned, you may be tasked with:

  • Managing your sibling’s medical care.
  • Advocating for public benefits.
  • Helping to cover their living expenses.
  • Assuming the role of trustee for their special-needs trust

If your caregiving responsibilities require you to scale back hours at work, or find a lower-paying job with better flexibility, you may also experience an income reduction when you become your brother's or sister’s keeper.

Preparation is key, said Cody Sutton, a financial professional with Stonewater Financial Group in Dallas, Texas, with expertise in special-needs planning.

“It’s different for every family,” said Sutton, whose brother has an intellectual and developmental disability. “That’s why financial planning for people with a special-needs loved one is unique. We don’t just plug in the numbers and say, ‘Here’s what you need to save.’ We go deeper and ask questions like whether or not you will be able to maintain a full-time job when you step into the role of guardian.”

The cost of caregiving

Sutton said his parents provided for all his brother’s needs and covered the cost of a group home through a special-needs trust, so nothing will change for him financially when his parents pass away. But that’s not the case for many of his clients.

Adult day programs for those with special needs that provide care during working hours from Monday through Friday cost an average of about $15,250 per year, while private rooms in licensed nursing homes cost roughly $78,000 per year for private pay clients, according to That is not the Medicaid reimbursed rate.

The cost of long-term care, however, can potentially be subsidized by government benefits, primarily through Medicaid — the federal and state health insurance program for people with low income and limited financial assets, notes. Adults with a permanent disability may qualify for Medicaid if they meet certain income and asset restrictions. Each state has its own rules.

According to the Special Needs Alliance (SNA), most states have also established Medicaid waiver programs with less stringent income and asset requirements. The most common of these are intended to support the needs of individuals with severe disabilities who are eligible for long-term, institutionalized care, but whose families prefer that they remain in their home or community. Such programs may include reimbursement for home aides, day habilitation, family respite, and therapeutic services.1

Why age 18 is important

If your sibling with special needs is age 18 or older, take note that their family’s assets are no longer considered in making eligibility determinations for public benefits. Siblings caring for a brother or sister with a disability should review benefits eligibility regularly and advocate for the resources they need.

“After an individual with special needs turns 18, everything needs to be reviewed and really that should happen throughout their lives,” said Kelly Piacenti, head of SpecialCare at MassMutual and the mother of four, including a son with special needs for 19 years. “Before you apply for new benefits, have the proper documentation in place to demonstrate the disability and do an assessment of what you actually need. Do you need someone to come to the house to feed your brother, or bathe him once a week? Do you need food stamps because you can’t cover the expenses on your own?”

You are more likely to help your sibling secure public benefits if you know what he or she needs.

Note that new legislation may also make it easier for your adult sibling with a disability to earn a small income to help cover some of their expenses without jeopardizing their eligibility for Supplemental Security Income and other public benefits.

  • The Achieving a Better Life Experience Act (ABLE Act) offers a tax-advantaged way for adults with special needs to save funds for disability-related expenses, up to $17,000 per year. (Learn more: ABLE accounts: Tax-favored savings for disability expenses)
  • The SECURE Act created a new class of beneficiaries known as an “eligible designated beneficiary,” which allows individuals with a disability to continue to receive payouts from a traditional IRA over their lifetime without causing loss of needs-based benefits.

The emotional implications of having a special-needs sibling

Having a brother or sister with a disability can have a profound effect on life. Many siblings of a loved one with special needs tend to mature more quickly than others who have a sibling without special needs. Earlier development of emotions related to compassion, patience, and empathy is also common.

However, while many are fiercely protective of their brother or sister with a disability, they may also experience feelings of jealousy, loneliness, and even resentment during childhood toward their sibling with special needs because they require so much of their parents' attention.

SNA reports on its website that that can trigger feelings of depression and other mental health issues: “It’s important for siblings to ‘unpack’ those intertwined emotions, and therapy can help. It’s usually better to deal with those issues as a child or teen than to wait until adulthood, when a spouse and/or children may be affected.”

Siblings also learn to see life from different perspectives, which helps 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.

Being financially prepared

From an emotional and intellectual standpoint, many siblings feel ready to assume the role of primary caregiver for their adult brother or sister because they've lived with and helped care 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 with your parents. Do they have a financial strategy? Have they drafted a letter of intent that spells out important details, contacts, and preferences for future caregivers? If your sibling with special needs is able to understand and sign legal documents, is there a health care advance directive or financial power of attorney in place? In cases of a significant disability, will you need to become your sibling’s guardian? Be involved in annual reviews and future planning to eliminate surprises.
  • Creating your own strategy. Ensure that 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 ease the transition from sibling to caregiver. Sutton said he tells all his clients with a child with special needs to give his contact information to their other children and tell them to call him as soon as the parents pass away. “This isn’t something you can jump on the internet and figure out in 30 minutes,” he said. “We typically work with parents for a decade before something happens to them and we know how everything is going to flow. We know what needs to change into the sibling caregiver’s name, we have the legal documents for them to take over medical care, and we walk them through the probate process so nothing is left directly to the child with special needs, which would affect their benefits eligibility.”
    • Speaking with your siblings (or other family members) about finances. Perhaps they can contribute. It may also be possible to divide caregiving responsibilities with your other siblings, with one managing the financial affairs and the other personal or medical affairs for your sibling with a disability.
    • Brainstorming future scenarios What are the financial implications? How might you prepare? For example, what happens if you are forced to move out of state? What if your sibling’s medical condition progresses and he or she eventually requires round-the-clock care?
  • Should you assume the role of trustee? Not everyone wants or has the skills to assume the role of trustee, which involves managing government benefits, making investment decisions, paying the trust’s taxes, and handling reporting requirements. It is also a major time commitment, which may not be possible given your job. SNA notes, too, that becoming a trustee could potentially strain your relationship with your sibling, since you might be put in the position of denying requests for trust distributions. Talk honestly with your parents about your willingness to wear that hat and whether a corporate trustee, with you providing oversight, might be best for everyone.

Ease in early

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 that you’ll be prepared later.

By doing some of the upfront preplanning 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.

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Special Needs Alliance, “Medicaid and Special Needs.”

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The information provided is not written or intended as specific tax or legal advice. MassMutual and its subsidiaries, employees, and representatives are not authorized to give tax or legal advice. You are encouraged to seek advice from your own tax or legal counsel. Opinions expressed by those interviewed are their own and do not necessarily represent the views of MassMutual.