Talk Money to Me: Getting Ready to Care for an Adult Sibling

Michelle and her husband care for their kids and prepare to take on the financial responsibilities for her brother and sister-in-law once her parents move into a retirement home. They both have intellectual disabilities that impact independent living.
Occupation: Stay-at-home-mom, who generates income from her Etsy shop.
Spouse’s Occupation: Engineer
Ages: Michelle is 37, her husband Mark is 39, their twin sons are six.

Current Savings: $23,000
Retirement: $51,000

Income
Wages: $4,700, spouse’s salary
Side Hustle: Up to $1,200 from sales on Etsy

Expenses
Mortgage: $1350
Home Repair: $100 to $1,000 per month (they are fixing up an old farmhouse)
Utilities: $398
Subscriptions:  Netflix ($8), Ancestry ($40), Misfits Food ($50), Book of the Month ($25)
Car Loan: N/A They buy used cars and pay cash to avoid loans.
Car Insurance: $77.25
Food and Gas: $500 
Health Insurance: Health insurance is part of Mark's employment benefits and covers all three of them. 
Student Loans: $700 per month
Savings per month: Up to $2000

Michelle is a busy mom who spends most of her days chasing her 6-year-old twin boys around her rural home in Monroe. Originally from Florida, where her parents still live, Michelle moved north after falling in love with the Pine Tree State during college. While she appreciates the peace of her new surroundings,  she and her husband are stressed out preparing to care for her brother and his wife, R. and A. 

"[They] are both 26, and they have intellectual disabilities," she says. "Right now, they live in Florida in an in-law apartment attached to my parents' house. But my parents are aging, and they can't keep up with taking care of them for much longer." Michelle explains that her parents are moving to a retirement community. Her dad has dementia, and her mom has severe arthritis.

"I always wanted to come back [to Maine] because life feels so much simpler, and there is so much more open space than where I lived in Florida," she says. "My spending habits are easier to rein in here. Down south, it is so easy to eat out and go shopping, but here everything is at least a 30-minute drive away, which really puts a damper on those impulses to spend money."

Michelle and her husband bought a fixer-upper in Monroe, a small rural town of fewer than 1,000 residents. They rarely see their neighbors, but they do get up close and personal with nature daily. Michelle once watched in breathless wonder as a moose wandered into her front yard and hung out while she stood motionless on her porch. Now her efforts are shifting from creating an idyllic rural haven to preparing for a neurodiverse household.  

The cost breakdown for preparing to move family members:

+⃞ $3700 to hire professional movers since Michelle nor Mark can take time off to drive

+⃞ $989 to fly to Florida and then fly R. and A. to Maine.

+⃞ $7000 home renovations to create a safe living space

+⃞ $300 to fill fridge, cupboards, and bathroom with food and personal essentials for R. and A.’s new home. 

▢ Transfer power of attorney over R. and A.'s finances to Michelle.

▢ Set up bank accounts in Maine for R. and A.

▢ Look through R. and A.'s income streams and assets to see if Michelle can find ways to save them money in case of surprise future medical bills.

▢ Have more family meetings about future what-if scenarios and create plans of action 

▢ Create a small space in her home office for organizing files, calendars, and other things to help make care easy to plan 

▢ Create schedules for feeding and getting dressed, grocery shopping, cooking and chores, doctors, therapy, and volunteering for R. and A.

"I will be spending a week in Florida this month signing legal papers to transfer my brother's financial stuff to me before they move to Maine. I have to oversee everything from helping them get ready for the day to packing them up and moving them across the country. It's so stressful to think about."

Michelle and her husband have sectioned off a portion of their five-bedroom, three-bathroom home so that her brother and his wife can have privacy. However, the cost of medical care and the labor of day-to-day caring will not come cheap.

"We need to pay to update their living space before they move in, and right now, that looks like it will be around $7,000," says Michelle. "Their bathroom plumbing is a mess, and we need to replace their windows, some electrical wiring, and rip out old carpets. We also need to install security and an intercom system so that while they can be as independent as possible, I am still able to keep them safe."

How much does it cost to care for someone with an intellectual disability?

According to PBS's Independent Lens, the cost of caring for a family member with an intellectual disability can range depending on the circumstances. Still, generally speaking, the national average runs around $5,000 a year. 

"R. is a pretty healthy guy, but his wife has some medical issues that require medications and frequent visits to her doctor," Michelle explains. "They have health insurance, but it doesn't cover everything, so we have to make sure that their finances are strong enough to meet her needs."

R. and A. each receive a monthly Federal Supplemental Security Income (SSI) check of $989. They do not have any assets. However, Michelle's parents have included R. and A. in their estate planning and have set up a trust specifically to pay for their medical and housing needs. 

Michelle says that she is happy to have her brother and sister-in-law join her little family in Maine. As nervous as she is about the role she is stepping into, "family comes first, no matter what. We just have to take it one day at a time and hope we find our groove."