By Rob Wrubel, CFP ^®

A friend of mine lives in a small New England town and told me of a man with Down syndrome who lives near him. The person with Down syndrome works in a doctor’s office and is seen every work day walking to the office and then home again at the end of the day. He lives at home and has the freedom, independence and ability to navigate his small town, show up for work, be productive and enjoy his home life.

Each person with a developmental disability has unique needs today and each family has a different vision of the future for how their family members engage with their community and where they will live.

By far the biggest stress and fear I hear from parents and caregivers is wondering what life will be like when they can no longer care for their loved one and where that person will live. Making long-term care decisions for an adult child with disabilities involves balancing their preferences and needs, family circumstances, and financial constraints.

Irish actor Colin Farrell, of “The Penguin,” “The Banshees of Inisherin” and so much more made headlines recently in connection with his 21-year-old son James, who has a genetic developmental disability called Angelman syndrome.

Farrell and James’ mother, model Kim Bordenave, decided to arrange for long-term care in a residential setting rather than caring for James themselves. Some people consider that too young; others understand the choice.

Farrell is quoted as saying, “…my horror would be, what if I have a heart attack tomorrow, and, God forbid, James’ mother, Kim, has a car crash and she’s taken too – and then James is on his own?” he added. “[He’d be] a ward of the state. And he goes where? We’d have no say in it.” As quoted online at The Independent. Colin Farrell decided to move son with rare genetic disorder into care facility | The Independent.

Farrell apparently made the choice to have his son live outside the home to put a safety net in place in the event of his dying earlier than expected. Others make the same choice for different reasons – to work towards independence or because their son’s or daughter’s care needs or too high to manage.

Whether you decide to keep you family member home until you reach an age where that does not work or decide to have your family member live outside the home in the near future, taking time to understand other living situations will help you reduce stress and improve your life today.

Consider the following to understand the choices you have and how to build a safety net.

• Take time to talk with the nonprofit organizations who deliver services to your family and network with new ones that offer care and support to your family member.
• When possible, discuss what your family member prefers. Seek their input and involve them in planning.
• Push yourself. So many families do not see their sons and daughters living anywhere but home. For many, that situation is best. Other times, we miss that our children grow and thrive in new situations. For me, I have two other children that I hope (fingers crossed and knock on wood) that they do not live with me for their entire lives. I want some version of independent living for my daughter with Down syndrome even though I do not yet know what that means and I find out more every day.
• People with disabilities live independently, with roommates, in host homes or group homes. In the past, I could not imagine my daughter living in a group home. Now, I better understand that she really enjoys being with her friends and maybe a supported community of some sort could work for her.
• Family and friends can help. Several friends and acquaintances of mine moved closer to family. They wanted their sons and daughters with a disability to have an immediate social network and caring family members around in the event of an emergency. This does not work for everyone but consider how you build a social network of caring people to assist you and support your family member.

Many factors impact your choices about having a family member stay home or move elsewhere and whether that happens sooner or later. Finances. Medical needs. The individual’s abilities. The state programs offered. The nonprofits in your community offering support. Your expectations and goals.

Making purposeful decisions is essential to securing their well-being into the future.  Engage your planning team to talk through your goals and expectations. Certain choices impact your financial plan and how you fund the special-needs trust. Others require financial support and your financial planner can help map out a savings and investment strategy. Public benefits remain important and you want your strategies to protect them.

Some days, I want to live in a small New England town and walk back and forth to work. It sounds ideal. What gets me even more excited is the idea of my daughter being seen, respected and given the same opportunities to live and work in our communities.

Sign up for more newsletters at www.robwrubel.com

This article is not intended as investment advice or representative of any specific investment strategy. Consult with your legal, tax, benefits and investment team before taking any action.