I didn’t get into financial planning because of a big interest in finance or investments. I got into financial planning to help families understand what a financial future could look like for someone they love who is receiving government benefits.
Disability is a world I learned of mostly after my childhood. When I was in college, I was introduced to a community of people with and without intellectual disabilities who lived together in homes in the Washington, D.C., area. I started to understand what adulthood could look like for people who relied on the care of others and I was curious enough to throw myself into learning more about the world they lived in.
I chose to move into the community as a caregiver to enrich my connections to the people I was learning from and to see where they would lead me. Being in a well-resourced county gave me the opportunity to learn about community peer groups for adults with intellectual and developmental disabilities (IDD for short), different kinds of group homes and networks of non-profits — some disability focused, others not.
I learned of adaptive programming offered by my county’s parks and recreation department, as well as the county’s loose commitment to connecting people with disabilities to meaningful community engagement. I say “loose” because the county didn’t seem able to integrate leaders with intellectual disabilities into the planning process to facilitate changes. From my perspective, society is a long way from recognizing the gifts and skills of people with IDD.
A Mass of Confusion
As a caregiver, I learned about Medicaid asset limits and understood that my housemates all had different Social Security income and rental agreements with the community — but I had no idea why. People living in the homes had a wide variety of benefits, including Railroad Retirement, SSDI, Tricare (some of our D.C. area families were retired military), and Medicaid. Even after living there for three years, I still didn’t truly understand how all the benefits worked and fit together.
After attending several conventions for IDD advocates, I realized families had the same confusion I had but were expected to find the appropriate resources for their children. And if they couldn’t, they were looked upon as not doing enough. Families were told they had to know everything; but in reality, they were given very little help.
The people I met in the convention rooms had a mixed understanding of benefits, asset and income limits, estate-planning rules, public resources, grants and networks. The conventions were a positive gathering space for most of us to vent and to connect over shared experiences, but we often left with more questions than we arrived with.
I understood that disability resources, benefits and regulations are not taught clearly. Families got together to share experiences and wisdom, but what applied to one family’s situation does not apply to all. I felt there were not enough of us who knew what we were talking about.
On A Mission
I decided to purse my CFP certification to learn “the basics” of financial planning, estate planning and benefits planning so I could start to wrap my head around what these families are expected to discover during their lifetime to support their dependent children. The biggest thing I learned was to sympathize with frustration. Even the offices set up to support individuals with disabilities habitually give unclear, vague or misinformation that lead people in the wrong direction.
If you are not in the world of IEPs (Individualized Education Plans) for students in high school and below, and ISPs (Individualized Support Plans) for adults outside of the school system, it is very challenging to find resources despite the support of social workers, teachers and other well-networked professionals.
That’s because each county has different people to contact, each state has different laws surrounding Medicaid eligibility and each Social Security office has different levels of awareness about disability benefits and other rules. The local, regional or national offices that individuals contact may be knowledgeable in the world of financial planning for supported individuals, or they may erroneously think they are and give people the wrong information.
Advisors have to make the effort to dig into the regulations and unique planning needs of each family or individual who comes to you who has a disability consideration because the regulations themselves are difficult to find and understand.
Tackling Real-Life Challenges
You may be curious how this works in real life. I will give you a composite of one of my client families. This family is not real but similar to people I speak with every day. A couple calls to find out what options their 25-year-old son will have once he is no longer eligible for health insurance through the parents’ plan. Their two older sons are financially independent, but their 25 year old is autistic and lives with them. He receives a reduced SSI payment because he does not pay rent to his parents.
Although the son with autism has a master’s degree, his psychologist and doctor have determined he is unable to work for an employer because he lacks coping skills when he can’t control his environment.
As their advisor, I will educate them on SSI, encourage them to review the son’s options on the healthcare exchange as a supplement to their states’ Medicaid program, review their Social Security filing strategy, and move the son’s benefit from SSI to the Disabled Adult Child (DAC) benefit. DAC is a program of SSDI based on the parents’ work record. I will also confirm that Medicare will be available after two years on the DAC and will never go away, review any and all assets the son has to protect from Medicaid asset limits, and review estate plans to confirm they won’t complicate his benefits.
I’ll also encourage my clients’ son to connect with a job coach or life coach to help assess whether he truly cannot work, as his doctor and psychologist had determined. This is unlikely considering he holds a master’s degree. He knows how to work; he just might not work well with people. I’ll also help the family explore options of independence, including all resource available to him for future support, and I’ll review the parents’ inheritance plan to confirm they have something set up in case he needs their future financial support when they are gone.
Big Bumps in the Road
What often trips up clients is that they don’t have a picture of what is possible, they don’t fully understand the complex Social Security options that are available (even after talking to a Social Security agent) and they also aren’t familiar with the available medical insurance options. Instead, they rely on the advice of short-sighted professionals who fail to look at the opportunities that could fit the disabled individual’s unique aptitudes and interests. Even well-meaning people may make inaccurate assumptions and provide misinformation.
I became a financial planner to be available to these families and to add perspective to their questions of what is next. I now have the opportunity to learn every day about new programs, networks, supports and other resources families across the country have found helpful . In addition, I have the opportunity to clarify what will be available for them in the future.
Every client’s situation is unique. In financial planning we know that you can’t plan with a retirement savings number because the number is meaningless without context. We need to have an understanding of a family’s current and anticipated expenses and life goals, not to mention the ever-elusive ability to predict how long individuals will live. Then add the complexity of trying to find resources for family members who will need support beyond a standard retirement lifetime.
A Call to Action
I demystify benefits, encourage creativity and look at the realities of my clients’ future from a different perspective. Watching my former housemates grow beyond what was expected of them by doctors, psychologists, teachers, parents, or siblings has shaped my perspective. Financial planning is the tool I use to make these families understand what their options are for future care and support. And I am always learning.
There is a small contingent of advisors like myself who focus on the stories of our clients’ dependent children, siblings or other family member to the extent that I describe. I have seen other advisors reluctant to advise these clients because they feel out of their professional capacity to give meaningful and in-depth advice. Honestly, I don’t blame them. The complexity of these client situations is what keeps many of us doing this kind of work. However, the realities are that too many people not getting good advice and there is too much work for those of us who do know the answers. We need more help from our peers and allies to help our client base.
Those of us who can describe the future life options of a dependent or supported adult with any reliability need help advising the clients who support them. Not all of us have the Chartered Special Needs Consultant (ChSNC) designation, but many of us have hands-on experience living with individuals who have special needs. As I mentioned earlier, I was a community caregiver. Many other advisors have children or other family members who require specialized planning. What’s more important than kiddie taxes and asset protection strategies are how an individual will be supported when their family is deceased.
Where will individuals with special needs live and how will life be paid for? Is there government support or are the best options “private pay” in a community or apartment living with hired support? Who will be there to support any changes needed? Nursing care rarely comes up in our meetings. (Please don’t recommend a 30-year-old live in a nursing home or retirement community! There are better options 95% of the time.)
Additional Reading: Understanding Neurodiversity Improves Planning for All
We Can Help
If you have a client who has support needs for a family member now or in the future and you don’t have the answer, please reach out to someone who does this work. We are not looking for your clients; we want more people to have answers. We are trying to help you teach your clients how to give their dependent loved ones specific support that can lead to more connected lives and fewer crisis moments during life’s transitions
Here’s where to find advisors who do this work:
- Academy of Special Needs Planners.
- ARC Resource guide.
- Autism Speaks Resource Guide.
- Chartered Special Needs Consultant holder.
In addition, sit in at FPA’s Neurodivergent Planners Knowledge Circle to learn a little more about neurodiversity and use professional associations’ search tools to find someone who specializes in special needs planning.
Elizabeth Wolleben Yoder, CFP, is the director of financial planning at Planning Across the Spectrum. She primarily meets with individuals and families to address the unique needs of disability to make sure they understand how government benefits impact their planning and how to find more local resources of support, housing and employment, all within the context of financial planning.
