If you’ve supported a loved one through illness or disability, you know the emotional toll but the financial impact could be just as significant
We Should ALL Plan for Care
What comes to mind when you hear the terms, special needs planning, long-term care planning, or disability planning? Many people immediately think of insurance, a risk that needs to be transferred by purchasing one policy or another. Many others think, “That doesn’t apply to me,” or they see the disability community as a charitable cause or minority that we should pity.
In fact, 24% of adults in America are already unpaid family caregivers. 1 Family caregivers, of course, include parents but also adult children, friends, spouses, and neighbors. They include people of all generations, socio-economic groups, and ethnicities. Caregivers provide ongoing support for a person with a disability, chronic illness, special need, mental health condition, service-related injury, or those that just need a little more help as they get older. Check out this chart for more details.
The rest of us could join that community at any time. Someone we love could acquire a disability or a medical condition that requires care. It’s also likely that most of us will be in a position of caring for a parent or spouse as they get older, or we may be the ones needing care. Planning ahead is about creating quality of life and the continuity that everyone deserves. To better prepare for the realities of care, it’s important to broaden our view of the community.
Understanding Disabilities
Disability is another misunderstood word. Some assume that the disability community only includes those with developmental diagnoses, like Down syndrome or autism. While that’s an important segment of the population, people with disabilities form a much broader and more diverse group. This includes individuals with conditions present at birth, those with progressive conditions like muscular dystrophy or multiple sclerosis, and those resulting from accidents or serious health events.
We also can’t assume that we know what others are experiencing in their day-to-day lives. While 28% of people in America live with a disability, most (75%) are invisible. The need for assistance and accommodations can vary widely, and many people with disabilities and caregivers don’t ask for help. So, if they don’t ask and you don’t share, no one may know about your family’s need for accommodations and care.
Caregiving in the U.S.: Realities and Costs
Some hear the word, “caregiver,” and think of a paid professional, such as a home health nurse. But the truth is, that family, friends, neighbors, and loved ones provide most care in the US. These people contribute time, money, and talents to help those they love, often without asking for anything in return.
I haven’t met a caregiver yet that complained about the burden of their role. It’s an act of love to raise children or help our parents live with dignity and enjoyment later in life. It’s an incredible gift to be there alongside your loved ones when they need household tasks performed, transportation, or just some good conversation and company.
Even unpaid care isn’t free. There are real costs to being a caregiver. It’s not easy working while caring for others, but 61% of caregivers also work full time. The added time and energy to care for an aging parent, sibling and/or spouse that needs help with their day-to-day tasks can take a toll. Some cut back on hours, use vacation time for assisting others, or leave the workforce entirely. Many prioritize paying for their loved ones’ needs above saving for their own financial goals. Caregivers must care for themselves as well!
A recent study estimates that it costs 28% more, or $17,690 per year, to provide the same standard of living for a household that includes a person with a disability. 2 These costs may be obvious, like medical bills, equipment, and therapies. But they may be less apparent, like additional housing and transportation expenses, not to mention the additional time and effort it takes to navigate a world that wasn’t designed to accommodate everyone’s needs.
Why Planning for Care Matters for Everyone
In my experience, people with disabilities tend to be particularly intent on independence. So are caregivers, wanting to ensure that they have dedicated resources for their own care and quality of life. Nobody wants to feel like a burden on others if they need assistance.
Many families that I meet are surprised that they can talk to their advisors about coordinating care, government benefits, family dynamics and care preferences. But I’d contend that these are some of the most important decisions in our lives and deserve at least as much planning as our retirement savings, income taxes, and investment portfolios. It’s a different conversation but one that we should all have.
At Foster Group, we encourage lives of meaning and generosity for our team, clients, and communities. We believe that preparing in advance for the costs associated with care is an act of generosity to ourselves and our families. Afterall, what could be more meaningful than planning for the quality of life for the ones we love? What does it mean to be truly cared for? It means we understand your passions and use proven methods to help you reach your goals.
