Caring for a disabled adult child takes planning

I received the most heartbreaking call last week from a reader of this column, a woman well into her 80s. She is providing care for her daughter, who was diagnosed with early-onset Alzheimer's. Unfortunately, the earlier Alzheimer's strikes, the faster it progresses.

We usually think of special-needs families as having a younger child who was perhaps born with a disability, suffered an injury or was diagnosed with a mental or emotional condition, such as autism spectrum disorder. This lady probably never imagined that, later in life, she would be taking on the role of caregiver for a special-needs child.

These types of situations are becoming more common because more adults are aging on their own. I saw a recent article that said nearly 26 million Americans 50 or older now live alone, up from 15 million in 2000. Many of them are alone by choice, having decided marriage and children were not for them. Others have children who live far away, and some lost their spouses to divorce or death.

Parents of an adult child who becomes disabled would find it very difficult to turn that child away if they were still physically able of providing care.

So, what advice would I give someone in the situation this brave lady finds herself in? It would fall into two categories - medical and financial.

On the medical front: I wrote a few weeks back about the importance of an adult child signing a HIPAA consent form, authorizing their parent to share medical information with health care providers and receive information in return. Besides the mother, the HIPAA should designate a backup representative, who could be a sibling or a trusted adviser.

A power-of-attorney for health care will be needed for when the daughter is unable to express her wishes. Both these documents should be executed early, before Alzheimer's robs the daughter of too much cognitive ability.

I would also want to make sure this lady's daughter is under the care of the right dementia specialists, such as a neurologist and a neuropsychologist.

Neuropsychologists evaluate cognitive abilities such as attention, memory, language, processing speed, visuospatial and executive functions. They should also be able to tell whether the patient is able to manage their own affairs. A neurologist who specializes in dementia can perhaps provide treatment to reduce symptoms and help a loved one maintain their quality of life longer.

Caring for a special-needs child - whether young or already an adult - is exhausting in mind, body and spirit. That's why I would recommend retaining the services of a good caregiver or home health agency, either for daily assistance or for respite care. A patient advocate could help make all of these arrangements.

On the financial front: For the financial advice, I consulted Mary Anne Ehlert, a certified financial planner whose firm, Protected Tomorrows in Lincolnshire, works exclusively with special-needs families.

Making sure a special-needs child has access to health care and services after the parents are gone is one of the key worries of their families, Ehlert told me. She and the advisers in her firm walk families through a step-by-step planning process to put their minds at ease.

"I think the most important thing in this case is to make sure the daughter has access to all of the federal benefits she's entitled to, such as Medicare, Medicaid, Social Security Disability and Supplemental Security Income, or SSI," Ehlert said. "This means she can only have so many assets in her name, aside from a primary residence and limited savings."

If the daughter is under the age of 65, her mother can establish a First-Party Payback Special Needs Trust, she said. "This is funded by assets belonging to the individual with a disability, or assets that individual is entitled to receive," she said. There are special provisions for when the individual turns 65, so it's important to consult with a financial professional or elder law attorney.

If the daughter will inherit from her mother's estate, those assets should be left to a Third-Party Special Needs Trust, which will provide for the daughter while not disrupting potential benefits.

Guardianship is another important consideration, but a guardian should be able to work with a team, Ehlert said. If guardianship is not yet necessary, in addition to the power-of-attorney for health care, a POA for property should also be put in place, identifying who has responsibility for legal and financial matters, she said.

As you can see, our advice has this in common: She doesn't have to go it alone. I hope this lady and her daughter get the help and support they need to navigate this difficult time.

• Teri Dreher is a board-certified patient advocate. A critical care nurse for 30+ years, she is founder of NShore Patient Advocates (www.NorthShoreRN.com). Her new book, "How to Be a Healthcare Advocate for Yourself & Your Loved Ones," is now available on Amazon. She is offering a free phone consultation to Daily Herald readers; call her at (847) 612-6684.