If you have a child with special needs, here’s how to plan for their life after you pass

by Deborah Nason

  • Are you the parent of a child with special needs? Breaking down planning for their life after you’ve passed can ease the process.
  • Any plan should address money management, self-care and housing.
  • Be sure to work with professionals, such as a financial advisor and an attorney, with experience in the field.

For parents who have a child with special needs, planning for their loved one’s life after they themselves are gone can be overwhelming. Breaking the process down into manageable parts and working with specialized professionals and companies can help.

“The three main structures a family should put in place to provide future protection for their child relate to money management, self-care and housing,” said certified financial planner Michael Beloff, partner and Chartered Special Needs Consultant with Belvedere Wealth Partners in Stamford, Connecticut.

Money management: If the child receives government benefits, such as Supplemental Security Income or Medicaid, parents will usually establish a so-called special needs trust that will shield assets to allow the child continued access to those benefits. The trustee is the person who oversees the funds and other trust provisions not under the child’s control, Beloff said.

Life insurance is essential, said CFP Colin Meeks, founder of Maryland Financial Advocates in Baltimore.

“It’s the cheapest way to fund a trust,” he said. “Because you need to know what’s left over [from your estate] in order to care for the child, it creates that certain bucket of money.”

Self-care: Parents must arrange the services their child will need to live independently or semi-independently (e.g., household management, medication management, doctor visits, personal care, etc.).

These supports may be overseen by a court-appointed conservator (or guardian, depending on the state) who makes all decisions regarding an individual’s financial and/or personal affairs, or by a person with power of attorney, who can make decisions, as well as the individual, Beloff said.

Parents are encouraged to write a “letter of intent,” a common planning tool that serves as a guide for those who will care for the child in the future.

It should cover family history, medical care, benefits, daily routines, diet, behavior management, residential arrangements, education, social life, career, religion and end-of-life decisions, according to the Autism Society.

Housing: With respect to future housing for the child, location is more important than the house itself, said CFP Andrew Komarow, founder of Planning Across the Spectrum in Farmington, Connecticut. Parents should think beyond keeping their loved one in the family home, he said.

“It’s more important to look at the individual,” Komarow said. “What interests and supports do they need?

“Parents may consider retiring to a community that supports the interests of the child.”

There is a trend toward more community-based living, said CFP Gordon Homes with WestPoint Financial in Indianapolis.

“State-administered Medicaid HCBS waiver programs allow people with disabilities to live in a house or apartment,” he said. “The state, in turn, provides staffing for a group of similar residents.

Sometimes, a group of families will purchase a collection of houses or condominiums, Homes said. “We’re seeing people rehabbing houses for roommate living, resulting in neighborhoods of people with special needs,” he said.

Building the team

One important role for a financial advisor is coaching parents on how to approach other family members and friends regarding the care of the loved one with special needs going forward, according to Homes at WestPoint Financial.

“They need these assurances in the conversation: that the government benefits will remain in force, there’s a source of money, there’s a team — such as a care manager, behavioral therapist, personal attendant care giver, guardian, etc. — and there’s a letter of intent,” he said.

The benefits of a special needs trust

  1. Coordinates available resources
  2. Ensures continuation of government benefits
  3. Provides supplemental needs for life
  4. Improves quality of life
  5. Directs final distributions

Source: Colin Meeks, CFP, Maryland Financial Advocates

It’s essential to work with specialists in this type of planning, Komarow said.

“A trust is not just a financial plan,” he said. “Specialty trust companies may be staffed, for example, by social workers who will arrange for daily living needs.”

But parents also have to find attorneys experienced in special needs planning, Komarow added. “Don’t tell them what kind of trust to set up,” he said. “Instead, let them know what you’d like to see happen, and let the attorney tell you what is the right trust for your situation.”

A special needs trust could add an additional $3,000 to $6,000 to a regular family estate plan, depending on its complexity and the area of the country, according to Charles Italiano, assistant director at Westchester Disabled on the Move.

Komarow recommends parents check the websites of the National Elder Law Foundation and Academy of Special Needs Planners for help with finding specialized professionals.

Complete Article HERE!

I put off explaining death to my autistic son.

Covid-19 convinced me I couldn’t wait any longer.

By Whitney Ellenby

Whitney Ellenby is the author of “Autism Uncensored: Pulling Back the Curtain,” founder of the charitable venture Autism Ambassadors and a former Justice Department disability rights attorney.

Even before I uttered a word, my son knew something was off.

My flustered movements alerted him to a shift in equilibrium in the house. The statewide coronavirus shutdown had just been announced, and as I struggled to wrap my head around the profound adjustments I needed to make, the fear of a grave illness was rivaled by an entirely different threat: How would I explain the crisis to my profoundly autistic 19-year-old son?

Zack’s language and comprehension are truncated; he has no conspicuous understanding of global adversity, personal sacrifice or collective safety.

The stakes of being truthful were greater than you might imagine. I’ve gone to extraordinary lengths to ensure that Zack fully participates in his community, even forcing him to remain at indoor venues he feared such as movie theaters, restaurants and airplanes. My “inclusion by fire” methods feel vindicated by the fact that Zack regularly navigates the world with competence and zeal.

But there is one dire exception — his absolute intolerance of unexpected closures. Zack has no interest in the reason: All venues should be open according to his schedule. Delivering news of a sudden closure — of a splash park shut due to lightning, a movie sold out — is perilous. In seconds, Zack lashes out in frustration. Sometimes I absorb the blows and hold my ground to enforce upon him the reality that disappointment is a part of life; more often I scramble for alternatives to distract him.

And now I couldn’t. For a young man whose life quite literally revolves around predictable schedules and recreation, virtually everything he depended upon had been eviscerated overnight.

In March, I sat Zack down and explained: “Zack, I need you to listen to me, something very scary is happening. You know how awful it feels to be sick? Well, a sickness is spreading across the whole world, and our job is to help keep people safe. So for now, school is — closed. Movies are closed. Indoor pools are ….”

I braced for impact, but instead Zack studiously began echoing the refrain of “closed.” I was astonished. In the weeks that followed, Zack’s ability to adapt to his constricted life far exceeded my expectations and reinforced my decision to tell him the truth.

Except I had not told him the whole truth. Zack had no notion that, as he rode his bike carefree against the wind, people were dying. Zack had no concept of death. Because I hadn’t summoned the courage to explain it to him.

I’ve always considered my most important job to be arming Zack with the knowledge and experience to function as competently as possible in the world, especially after my husband and I are gone. But I have not prepared him for the fact that we will be gone. As I listened to stories of beloved mothers and fathers dying, I was gripped with heartbreak and fear — would I further postpone and hope neither of us got sick?

That felt immoral. It was time.

“Zack, I need to tell you something serious,” I began. “Many people are getting sick, and some of the people who go into the hospital to get help will not get better. They will die from this sickness.” Zack is a literal thinker who deals in absolutes and concrete visuals, not abstractions. So in response to his quizzical stare, I turned on the TV to still frames I had taped of body bags being moved into a truck.

“Zack, these bodies are ….”

“Sleeping?” he asserted, tentatively.

“Broken?” he then offered, borrowing a concept he applies to objects that I’ve reassured him would soon “be fixed.” Dreading his response, I answered, “No, they are not asleep or broken, they are dead. They will not wake up. They were too sick to be fixed. They are ….”

“Closed,” he whispered gravely.

A huge exhale escaped me. “Yes, Zack, they are closed,” I said, explaining through tears that this happens to every person at some point, that their life comes to an end. And how, even when people die, as hard as it is, the rest of us have to keep living without them.

Zack became still. His countenance darkened as he processed my words — and then suddenly he lashed out. But the target was the TV, with its cruel, wintry images of death, as Zack smashed his fists into the screen and even his own head. The universe was once again disordered and the outcome unacceptable to him. I interrupted the exertion not to comfort Zack but to redirect his blows toward a wall sturdy enough to absorb them. He was incredibly infuriated, which felt entirely appropriate. More essentially, with each strike I was certain the excruciating lesson was being slowly, agonizingly absorbed.

So far, Zack has not openly made the intellectual leap that this state of permanence, which is “closing” the lives of so many right now, will one day end mine and my husband’s. That he will one day lose us, but must persist. Now is not the time to make that linkage, but it will come. Engraved into his consciousness of how the world operates is a new notion that while some closures are temporary and fixable, others are unchangeable. For now, that is enough.

Complete Article HERE!

What’s Going to Happen to Junior, Now That His Mother Is Dead?

A Manhattan man with autism was sent to a quarantine facility after his mother had symptoms of the coronavirus and died.

Daysi Díaz, an immigrant from Honduras, worked as a seamstress and later as a home health aide.


Daysi Díaz, 65, was afraid to see a doctor, despite a fever that wouldn’t go away. If she was diagnosed with the coronavirus, she might have to be hospitalized. Who would look after her son, Junior?

So Ms. Díaz stayed put in her ninth-floor apartment in a public housing project in Upper Manhattan, growing weaker. Relatives called her often to check in. During one such call in March, Ms. Díaz collapsed. In her final words, she called out for Junior. But he was in a deep sleep.

After his mother’s death, Junior, who is 31 and has a developmental disability, was hospitalized and sent to a quarantine facility in Queens.

His stutter has worsened. He has struggled to make sense of his mother’s death, wondering if she is in heaven. And he has wrestled with anxiety, said his aunt, Carmen González, who is Ms. Díaz’s sister-in-law.

“She thought she was going to live to take care of him,” Ms. González said.

The toll wrought by the coronavirus is forcing some families to confront a wrenching question years before they believed it would be necessary: If a caretaker dies, who will care for disabled adult relatives?

“As Covid-19 sweeps across our city and nation, a lot of parents are coming to the realization that they aren’t going to be here forever and they need a plan,” Jonathan Novick, an outreach manager with the Mayor’s Office for People with Disabilities, wrote in an email.

Adults with intellectual and developmental disabilities have been hit particularly hard by the coronavirus, which has torn through group homes. But the virus also poses a threat to adults with these disabilities who still live with their aging parents.

“We are going to see more and more cases like this one,” said Dominic Sisti, an assistant professor of medical ethics at the University of Pennsylvania.

While there’s no indication Ms. Díaz was ever tested for the coronavirus, Junior was recently diagnosed with a mild case of Covid-19, so it seems likely that his mother also died of the illness caused by the virus, Ms. González said.

Initially, that made finding a new home for Junior more difficult. But in recent days, a family friend has taken Junior in.

Junior had lived with his mother for the past decade. An immigrant from Honduras, Ms. Díaz worked as a seamstress and later as a home health aide, before injuring her back lifting a patient.

Ms. Díaz was often vague when describing her son’s disability to relatives. But his aunt, Ms. González, said she believed he was on the autism spectrum. A health care provider directly involved in Junior’s care confirmed that to be the case.

The family did not make Junior available for an interview because Ms. González said it might confuse him and leave him unsettled.

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His father was not involved in his life, according to Ms. González. Junior spent his childhood in institutions after showing aggressive behavior at age 5 or 6, she said.

“He went from one place to another,” said Ms. González, who is a retired teacher. “His mom would go everywhere he went, all the time to visit.”

He returned home around age 21, at which point Ms. Díaz became her son’s caregiver. It was often difficult. Tantrums often sent him onto the floor, where he would pound the ground with his fists. But with his mother’s help, he began to exercise some independence.

He loved to look through coupons and fliers left in lobbies, always searching for a bargain. His mother would send him out shopping, an outing that he enjoyed.

His mother’s daily worry was that he would behave in a way a stranger found inappropriate and that things would spiral out of control.

On March 21, Ms. Díaz developed a headache and then a high fever. Soon she was coughing so loudly the neighbors could hear it.

At the time, hospitals were inundated with Covid-19 patients. The city was urging sick people to stay at home, if possible. Ms. González said she received little guidance after calling 311 seeking help for her sister-in-law. “Don’t go to the emergency room,” Ms. González recalled the operator telling her.

Still, Ms. González urged her sister-in-law to try an urgent care center. But Ms. Díaz was too weak to get anywhere on her own. She wasn’t sure whether she had the flu or the coronavirus, but she was scared to find out.

“Truthfully, she was afraid of having the virus, because she didn’t want to leave her son,” Ms. González said. “What’s going to happen to him, you know?”

On the morning of March 31, Ms. Díaz was on the phone with an aunt when she began to call out for Junior. Then the phone fell to the ground. Ms. Díaz had collapsed, according to Ms. González.

An ambulance crew arrived and tried to resuscitate her but failed. . Hours later, Junior was later taken by ambulance to NewYork-Presbyterian Columbia University Medical Center, near his home in the Dyckman houses. There was nowhere else to take him.

Ms. González, 72, who is raising her 6-year-old grandson and also cares for an older sister, said she wanted to take Junior in, “but my hands are totally tied.”

In early April, Junior tested positive for Covid-19, though he showed only mild symptoms, Ms. González said. He spent several weeks at the John A. Cook Center in Queens, a facility that ordinarily runs programs for adults with developmental or intellectual disabilities but is now being used as a quarantine center for disabled adults with Covid-19.

He passed the time watching documentaries. In phone calls with his aunt, Junior often brought up his mother.

“My mother was a loving mother and took good care of me,” he said, according to Ms. González.

But the conversations also were unpredictable.

“Why don’t they call 911 to put out the fire in hell?” he asked his aunt once. She said she steered the conversation back to heaven, explaining that if he was good he’d end up there with his mother.

In early April, a family friend who has a son with special needs agreed to take in Junior. But Junior’s Covid-19 diagnosis led to a delay of several weeks.

Then last week, with Junior appearing healthier, he moved in with the family friend at her home in Yonkers. So far it has been a good fit, Ms. González said.

In recent phone calls with his aunt, Junior has started to grieve more openly.

“He asked me if it was OK to cry because his mom died,” Ms. González recalled last week. “I told him that it’s OK and that he did not have to hold his feelings inside.”

Complete Article HERE!