Aging caregivers and the double-aging reality

Ruth was in the driveway for forty minutes before a neighbor saw her. Peter was inside eating breakfast, unaware that Ruth was in the driveway, unaware that the next forty minutes would decide whether he came home from the hospital that afternoon or lived with an aunt he had not seen in seven years. Ruth came home. The hip healed. But she spent the next Saturdays writing what she now calls the Peter book, sixty pages of everything only she knew, distributed to three siblings, the case manager, and the day program director. She did what most caregivers put off until the fall they do not walk away from. This is the post about doing it before.

The rate we do not want on the front page

The State of the States in Intellectual and Developmental Disabilities project at the University of Colorado, running annually since 1982 and now under the American Association on Intellectual and Developmental Disabilities, has documented for decades that approximately one in four family caregivers of an adult with IDD is over the age of sixty. That figure has climbed since the 1980s and continues climbing. Roughly 850,000 adults with IDD in the United States live with a family caregiver age sixty or older. Their next residential placement, when the caregiver can no longer serve, is often not planned.

This is not a demographic curiosity. It is the actual coming crisis in adult disability services in the United States. It arrives one family at a time, usually with a fall, a stroke, or a sudden diagnosis. The plan the family should have written five years earlier gets written in a hospital hallway. The transition the adult should have rehearsed for months happens in three days. Preventable failure follows.

Two bodies aging in the same house

The peculiar physics of double-aging is that both parties decline on different curves and the failure modes stack. Your knees give out at sixty-five. She weighs the same at forty-six as she did at forty. The transfer that was routine for a decade becomes a two-person job overnight. You cannot do it alone. She does not know why the routine has changed. Both bodies are now in the problem.

The health monitoring has to be paired. When you get an annual physical, she gets a review. When she has a specialist visit, you use it as a moment to review your own equivalent condition. When you take a prescription that affects your mobility, you write down what care tasks it now blocks and you tell the case manager. The care team supports both of you, not just her. The team you built for her health is the team that carries you when your health slips.

The Letter of Intent

The Letter of Intent is not a legal document. It is the operator’s manual. Two to twenty pages, written in your voice, updated every year on your birthday. A court will read it. A case manager will read it. A sibling will read it at two in the morning after a phone call from a hospital. It answers questions the paperwork never can.

The letter has ten sections. Who she is, in the way you would tell a new friend. Her medical picture, including what has been tried and what did not work. Her communication style, and the phrases she uses that only her people understand. Her preferences, from food to fabric to what noise she cannot stand. Her routines, hour by hour on a typical day. Her fears, and how to head them off. Her people, past and present. Her money, and how you have used it. Her hopes, in her language. Your hopes, in yours. And a final page addressed to the person who will be reading this when you cannot answer questions.

The letter is written by hand or dictated to your phone. It is stored in a fire safe. Copies are held by two siblings, the trustee, the successor guardian, and the day program director. Every May, on your birthday, you take it out and you update the parts that changed.

The trust that is not a will

A Special Needs Trust is not a will. A will disposes of your property at death. A Special Needs Trust holds assets for the benefit of your adult without disqualifying her from Medicaid, SSI, or waivered services. If you leave money to her directly in a will, you may accidentally end her benefits and undo twenty years of planning.

Every family with an adult with IDD needs a properly drafted third-party Special Needs Trust before the assets are transferred. You get one drafted by an attorney who does this work regularly, ideally a member of the Special Needs Alliance. You name a trustee, a successor trustee, and you fund the trust in a way that will grow with her life. You do not do this from a form website. The dollar you save on the drafting is the dollar the state claws back from her at your death.

You update the trust every three to five years, or whenever her situation, your situation, or the tax code changes. All three change more often than you would think.

Naming a successor guardian

If a guardianship or supported decision-making agreement is in place, the paperwork should name a successor. The court should have the successor on file. The successor should have met your adult, met the case manager, and read the Letter of Intent. The successor should know where the fire safe is. The successor should have the phone number of the special needs attorney who drafted the trust.

If no guardianship is in place because your adult’s supports work through supported decision-making agreements, the same principle applies. The named supporter’s successor is on file. The successor has met the adult. The successor is not surprised on the day.

The residential waiting list you should not have waited on

In most states, Medicaid HCBS waiver-funded residential placements have multi-year waiting lists. In some states the wait is more than a decade. If you are the primary caregiver and you have not applied for the residential slot she will one day need, apply this month. She may not need it for fifteen years. She may need it next year. The application is what buys the option.

Applying is not commitment. In most states you can decline a placement when it is offered and remain on the list. Declining once is often penalty-free. Declining repeatedly may push you to the back. Read your state’s rules. Get on the list. Manage the list.

Parallel path: look at Shared Living or Host Home models where an adult with IDD lives with a paid non-relative family under HCBS. Look at supportive apartment programs. Look at agency-run homes and self-directed staffing models. Do not settle for the first placement your PIHP offers if better fits are on the list.

Rehearsing the incapacity

The scenario nobody wants to say out loud: you have a stroke. She is home. What happens in the next seventy-two hours has to be planned before the seventy-two hours arrive.

The plan has four elements. First, a written emergency care sheet on the refrigerator that a paramedic or a neighbor can hand off. Second, a named phone tree of three people who can be at the house within an hour: sibling, close friend, case manager. Third, a bridging provider (an agency or a trained hired worker) who can cover forty-eight hours of care while the phone tree activates the longer plan. Fourth, funds or authorization in place so the bridging provider can be paid without you making the phone call from an ER bed.

You practice the plan the way you practice a fire drill. You call the sibling and you say, this is the drill, and you time how long it takes for coverage to arrive. You debrief. You adjust. You do it once a year on the same day you update the letter.

The peace that comes after

The families I have watched do this well share a feature. They stopped treating the paperwork as a task that would depress them and started treating it as the artifact that would let them relax. The Letter of Intent, once written, is not a burden. It is a permission slip. Now the caregiver can go on a weekend trip. Now the sibling can be given the information she has been asking for. Now the plan for the day of the fall is not a mystery.

You did not sign up for a lifetime of holding the entire care plan in your head. You did that because there was no one else. There is someone else. Give them the manual. Update it once a year. Live the rest of the year knowing that if the fall happens tomorrow, she has a next.

Jim Palasty is the founder of OASIS for Autism and a single father of an adult autistic daughter in Michigan.