The Disabilities Crisis

Disabled Americans Financially Insecure while Their Caregivers are Woefully Unprepared for Retirement

Will there be enough money to last a lifetime?

Bryn Mawr, PA, September 26, 2016 – A survey of families with children with special needs found that a large majority (82%) of caregivers are concerned that they do not have enough financial resources to last their disabled relative’s entire lifetime. Just as alarming, because of the time and cost required for caring for those with special needs, 30% of caregivers are not saving at all for their own retirement.

These findings are part of the new Special Needs Caregiver Survey from The American College of Financial Services, which sought to better understand the challenges that caregivers of special needs children and young adults face managing their day-to-day and long-term finances, as well as explore possible solutions that may help these households prepare for their dependent relative’s financial futures.

“Caring for a child with special needs is a full time job that requires all of your emotional and physical energy, which is why it makes sense that planning beyond the present is often delayed or ignored,” said Professor Adam Beck, Director of The American College MassMutual Center for Special Needs Planning. “Leaving a special needs child financially insecure is a serious problem and this study confirms that a majority of special needs families lack the most basic preparations for their own financial security and that of their child.”

Disabled Americans’ Financial Crisis

Caregivers are concerned about what the future holds for their special needs relative, and for good reason. Alarmingly, 67% of Americans with special needs have no Special Needs Trust established for them, which puts them at imminent risk of losing Medicaid coverage and Social Security benefits.

  • Almost nine in ten caregivers (87%) are concerned about what will happen to their special needs relative when they are no longer living.
  • 59% of caregivers have not even taken the basic step of preparing a will
  • 60% of caregivers with life insurance have less than $300,000 of coverage and fewer than half have the protection of whole life coverage. However, the lifetime cost of caring for a dependent with autism is between $1.4 and $2.4 million.
  • Only 23% of caregivers have a formal financial plan for their dependent and only 37% work with a financial advisor.

Retirement Gap

Caregivers are also concerned about their own financial future and how their caregiving responsibilities may adversely impact their retirement. Most special needs caregivers will be caregivers for the duration of their lives – encompassing their entire retirement period – yet almost one-third of this group (30%) is not saving at all for retirement.

The number of children born with special needs continues to grow, and the cost of care is escalating as well

  • Only 16% of caregivers strongly believe they are financial secure.
  • 70% believe they will have to compromise their own retirement plans in order to provide for their special needs dependent.
  • 77% are concerned they won’t be able to retire when they want to.
  • 80% of caregivers are concerned they won’t be able to maintain a comfortable lifestyle throughout retirement.

“The number of children born with special needs continues to grow, and the cost of care is escalating as well. Unfortunately, the financial services profession has not made special needs planning a priority, so too many families are unprepared for their financial future,” continued Beck. “However, there are well-established resources for special needs planning and advisors who specialize in serving these families. Together, these solutions can help provide financial security for both caregivers and those in need.”

The Opportunity to Help Families of Those with Special Needs

Although financial advisors are viewed as important sources of financial planning advice to special needs families, most caregivers do not currently work with one. Most caregivers (63%) don’t work with a financial advisor; however there is strong interest in working with a financial advisor who specializes in special needs planning. Among those who do not have a financial advisor but want one, 98% would be somewhat or very interested in working with someone with expertise in special needs financial planning issues.

  • Professional designations are highly valued, with 87% of those who have an advisor or want to work with one say it’s important to work with a financial advisor who has professional designations.
  • 90% of caregivers believe having an advisor who works for a company that has products and services for special needs households is important.
  • 84% of caregivers who value designations say that they would be more inclined to work with an advisor who holds the Chartered Special Needs Consultant™ designation (ChSNC™).




The questionnaire for this study was designed by Greenwald & Associates in cooperation with The American College of Financial Services. Information for this study was gathered through 20-minute online interviews conducted between March 30-April 12, 2016. Respondents were recruited through the Research Now online panel, and a total of 1,015 Americans were interviewed. To qualify for participation in the study, respondents had to be unpaid caregivers to a child or adult who has some type of special needs or disability and to whom they are related; caring for a special needs individual whose condition was expected to be lifelong or to last for an indefinite or unknown duration; and needed to agree that the special needs individual will be, or is, unable to support themselves financially as a result of that condition.
About The American College of Financial Services
The American College is the nation’s largest non-profit educational institution devoted to financial services. Holding the highest level of academic accreditation, The College has served as a valued business partner to banks, brokerage firms, insurance companies and others since 1927. The American College’s faculty represents some of the financial services industry’s foremost thought leaders. For more information, visit here.