In this ongoing series, we feature comments from Forum partner Mary Anne Ehlert, a highly regarded specialist working with families of individuals with disabilities. In this Q&A, Mary Anne highlights common issues for caregivers who are caring for a loved one with special needs.
What is the most overlooked element of planning by caregivers of loved ones with special needs?
As a sister, mother and daughter of individuals with disabilities, I can say that it is an overwhelming responsibility. It is also a special responsibility. When someone is in the caregiver role, it surpasses any and all reasonable self-care.
This passion for care of a loved one carries forward into a caregiver’s overall thinking. Caregivers often overlook the possibility that their own future care might require a significant portion of their savings and reduce the amount available for the future care of their loved one. This all needs to be addressed when putting together a financial plan.
As one example, retirement planning looks different for a couple who has a family member with a disability because they need to adjust their retirement planning to account for three people. They must fund living expenses for their loved one throughout their own retirement and well beyond their own death.
Do caregivers see the world differently than other people?
Caregivers have difficulty looking at the big picture. They frequently overlook the long term because of what is required to care for their loved one today and tomorrow.
For caregivers of very young children, they may not be able to imagine a time when the “bus stops coming.” The same situation applies for caregivers of aging parents who often are faced with the two-sided emotional struggle of wanting the caregiving to be over but also wanting their parent to be around happy and healthy.
That is why it is important for financial advisors to understand that return on investments and other matters related to a portfolio might not be top of mind for a caregiver. Instead, caregivers of young children are thinking about doctors, government benefit meetings, IEPs and behavior issues while caregivers of aging parents are focused on living arrangements, the family sharing of care responsibilities and quality-of-care issues.
Because these individuals tend to only focus on the care of their loved one in the present moment, they need help refocusing to allocate some of their mental energy to longer-term planning.
What factors should a caregiver consider when evaluating home health care for a loved one with special needs?
Supportive needs can be physical, developmental, cognitive or a combination of the three needs. The care required can include home care, care in a group setting or a more defined facility. However, caregivers also need to consider transportation needs, modifications in the home that might be required and access to recreation and employment, if he or she can work.
If the person with the disability is a child, coordination of the special education system becomes critical. When caregiving for a parent, home health care can involve coordinating with doctors, Medicare, insurance and different vendors to provide medical support devices such as oxygen delivery. Even knowing when and how to update the drug prescription plan each year can feel complicated at times.
What kind of support is available for caregivers?
Caregivers need respite from their caregiving role and they need support just as the person with the disability does. What’s more, they need to learn to call for help when they need it — sometimes for an evening, sometimes for a weekend, and sometimes for longer.
Being a caregiver is a task that can take over one’s life, and as they say, the caregiver must first care for himself or herself to be good enough to be a caregiver.
Support for caregivers varies by region, by state and by community. National and local respite services are available as well as many other support groups. One such resource is the National Respite Network and Resource Center.
About Mary Anne Ehlert
Mary Anne Ehlert works with clients who seek an advocate who will listen and provide compassionate support to navigate complex planning situations. Mary Anne’s clients include professionals, business owners, widows and widowers, divorced women and families with an individual with a disability. Previously, she spent 18 years in senior management positions in the banking industry. Mary Anne is a CERTIFIED FINANCIAL PLANNER™ professional.
Protected Tomorrows, the special needs division of her practice, helps families plan a safe and fulfilling life for loved ones with special needs. An advocate for special-needs families, Mary Anne has appeared in many publications and travels extensively to speak at local and national conferences. She serves on the boards and committees of several organizations, including the Board of Directors of Special Olympics Illinois, the Strategic Planning Committee of the National Disabilities Institute in Washington, DC, the Advisory Board of Integrative Touch for Kids in Tucson and Tails for Life in Wisconsin.
She studied Business Administration at Loyola University Chicago. She is author of The Gift I Was Given and one of the contributing authors in Madam President: How to Think and Act Like a Leader.
Mary Anne Ehlert is President of Protected Tomorrows, Inc. which provides advocacy and planning services for individuals with disabilities and their family members. Clients of Protected Tomorrows, Inc., may also be clients of Forum Financial Management, LP. The fees earned by Ms. Ehlert in this outside business activity are separate and apart from the fees clients pay to Forum for advisory services. Protected Tomorrows, Inc., is not affiliated with Forum Financial Management, LP.