March 22, 2019

When We’re Gone: what will Happen to Our Children with Disabilities?


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One day, while having my morning coffee and thumbing through the newspaper, I spotted an article that instantly caught my attention.

It read something like this: “Mother and Disabled Child Die in Bronx Apartment.”

I naturally assumed there had been a fire or some other disaster that can kill multiple people; what I then read caused me to swallow hard.

The story told of an 80-year-old woman who had spent the last 44 years of her life caring for her developmentally disabled son. Neighbors described her as a private person who only left her apartment to purchase food. They lived in a four-story walk up, and she had no way to get her wheelchair-bound son to the street without the assistance of several neighbors. The address given was just two blocks away from where I sat in my office.

The woman slept with her son so she could check on him and tend to him during the night, and the story reported that the woman had died in her sleep. Her son, unable to speak or move on his own, starved to death in the bed next to her.

If only she had known we were here—if only we had known she was there.

That was in 1985, and I was a young, newly minted, Associate Director for a small agency providing residential services for individuals with Intellectual Developmental Disabilities (I/DD) in the Bronx, New York.

On this day, it became my life’s mission to always speak to parents of children with I/DD about planning for their child’s future before it’s too late.

But this story had also touched me in a more personal way, because my brother Patrick has I/DD.

In June of 1982, my mother passed away. My father and my younger sisters were left to care for my brother, who was in his early 20s.

Today, having worked for 36 years in that same small agency, I have seen firsthand, the turmoil that can ensue when a parent or caregiver of an individual with an intellectual disability/developmental disability becomes gravely ill or passes away with no plan in place for that child.

The upheaval on the child, their siblings, or other family members, can be devastating.

I write this article in hopes of offering some insight to the parents and caregivers about planning for the future and what that entails. I also hope to reach other professionals in the field who can offer assistance to these families by encouraging them to plan sooner, rather than later, when options become scarce and decisions need to be made in haste.

My perspective is from New York State where I work, but much of the information provided here is similar in all states.

In 2016, an estimated 11,000 people in New York State alone had expressed interest in residential placement for a child. There are also many people with I/DD in New York State that are down to one single caregiver.

Often the story goes like this; the parent becomes gravely ill and is hospitalized, and if an immediate family member is not located, the child is often hospitalized along with parent, because there is no other place for them to go.

The hospital social worker will contact the state’s “Office for People with Developmental Disabilities,” who will learn of the parents’ and child’s condition, and then begin the process to get the child evaluated. If the parent is not likely to be able to care for the child, or is terminally ill, the child will go on the priority placement list, but remain in the hospital until a placement is found.

Sometimes, while lying on their back in a hospital bed, a parent or caregiver will have to decide whether to not to place their child in a residential facility they have never even visited.

This situation could be avoided if parents recognize they need to plan for their child’s future while they and their child are still young. Getting other family members to meet and agree with this plan is also vital.

Below I outline some steps that should be taken:

Define who the caretakers will be.

Hold a family meeting and invite anyone that plays an active role in the child’s life. If old enough, include the child in the discussion as well. All in attendance should be asked to be honest about what they are willing to do. A brother or sister who says they do not want to care for their sibling with I/DD after their parent(s) pass away should not be scolded or coerced into changing their minds. Invite them to remain involved with the care plan at whatever level they are comfortable with. Be leery of the extended family member who is willing to do a great deal. Be sure their commitment is genuine.

If the person committing to care for the child does not live in the family home, have them spend time learning how to care for the child either on weekends or evenings.

If not already, the parent(s) should become the child’s legal guardian of person and property. The person responsible to care for the child after the parents’ demise, should be named alternate or co-guardian.

Look first into short-term planning.

What will you do if the parent has an emergency medical need and is hospitalized or has to have elective surgery? Many states, including New York, have respite services where the child can go and be cared for until the family member or caregiver is back on their feet. Respite is usually very short-term (two weeks to a month), so additional plans must be determined if the caregiver’s recuperation time is extended.

There should always be a document for the child with I/DD, listing items such as their official diagnosis, list of medications, list of allergies, Medicaid or healthcare card, physician’s names and numbers, recent hospitalizations, their likes and dislikes, and any other important things to know about the person’s care.

A list of who is to be contacted if something happens to the caregiver, is also important. It is vital to keep this list up-to-date and to have multiple copies with various family members who might be pressed into service. This list can prove to be invaluable to a family member caring for a child with I/DD who suddenly becomes ill. Having this information at hand, also speeds up the admission process in an emergency room, or when applying for respite services.

Long-term planning for your child’s care.

Parents should consider prepaying for funeral arrangements for their child while they can still make those decisions. Social Security Disability Benefits allows a portion of the person’s personal allowance to be set aside for prepaid funeral arrangements. It doesn’t have to be extravagant; it just needs to be done.

Ensuring that proper arrangements are completed and paid for, relieves the burden on those left behind to care for the child. But also can benefit elderly parents and caregivers who may not have the financial resources to bury a child who passes away before them.

In many states, leaving money in a will for a person with I/DD is asking for trouble. Often, if the person with I/DD is receiving Medicaid services, the child will lose that entitlement until the inheritance is spent down, at which point they can reapply.

Estate Planning before your child turns 18 is also worth exploring. You can include funds to take annual vacations, provide for transportation to visits family and friends on holidays, or provide any of the special things your child likes in this trust fund.

Options for placement should also be discussed, and these need to be looked at differently based on the child’s functioning level and family resources.

If one of your options is to have the child remain in the family home, the home can be placed in the Special Needs Trust with a provider agency or some other entity that keeps the person at home, and perhaps also allows additional persons with I/DD to live there and pay rent. This requires the home to be solely owned by the parent(s) and would also require the siblings to understand that they will lose the home as an inheritance. Sometimes, the home is bequeathed to the sponsoring agency that provides the services, so that it can continue to be a home for the other individuals living there into the future.

One benefit of securing the family home in a trust ensures the person won’t have to move and can remain in familiar surroundings.

Preparing the child for what will occur when a parent passes away, becomes gravely ill, or moves to a nursing home, will depend on the level of understanding of the child. But then again, if the child has the capacity, then they should be part of the planning.

Another option is for the family to secure, through a viable agency, a supportive apartment or co-op where the person would live alone or with two to three others with I/DD, all sharing the rent. Depending on the person’s functioning level, care in this type of setting could be around-the-clock or just a few hours per week.

Co-ops can also be purchased in the child’s name with care and rent charges to be paid or shared with their roommates.

In regards to apartments or co-ops, the transition can be seen as a positive one and the excitement of moving out on ones’ own or with new friends emphasized. Picking out paint colors and furniture can make this a pleasant experience for you and your child.

Another option to consider is residential placement in a group home where the person with I/DD could live with others with I/DD.

With regards to group home placement, parents have the right to reject a placement if they feel the facility being offered is not right for their child.

More importantly, once the parents have found a suitable group home, they can remain an integral part of the child’s life, assist staff in getting to know their child, be part of the child’s program, and have peace that the staff will care for the child even after the parents are no longer alive.

Within all these options are many levels of preparedness and a great deal of work that needs to be done. However, the benefits of knowing your options in advance and not having to make these decisions in haste is priceless.

My brother Patrick is high functioning (called Mild I/DD), which means he can do a great deal for himself. He can speak, make his wishes and wants known, and perform all activities of daily living. We are fortunate that Patrick has self-preservation skills and can cook and clean for himself. He is also an avid sports fan who reads three newspapers a day—always the sport sections first.

In 1990, my father passed away, and a short time afterward, I sat with Patrick and asked him if he would want to move to a group home or perhaps a supportive apartment and live more independently. My brother looked at me and said: “Why? Don’t you guys love me anymore?”

I felt this instant knot in my stomach, and my eyes welled up. I assured my brother that we all loved him dearly and that we were only trying to offer him options for his life. Again he looked at me and said quietly, “I’ll stay here.”

My siblings then formulated a plan, whereby my brother would live with my two sisters who were still at home at the time. When my younger sister Eleanor married, her husband and my other sister, Mary, then purchased a home together where the three of them and my brother still live.

Patrick is 61-years-old today and retired from working for my agency as the confidential paper shredder. He was the perfect guy for that job because if it wasn’t about sports, it wasn’t necessary to read.

My sisters and I are grateful that he can remain home for the foreseeable future, and we all know how lucky we are to have these options for Patrick.

The call to prepare for the future for your child with I/DD is now. With shrinking placement opportunities, an ongoing federal battle about what is considered community living versus institutional living, and the growing number of aging persons on the autism spectrum will only continue to reduce available options in the future.

Preparing for your child with I/DD for after you’re gone can be difficult and heart wrenching, but by making these preparations now, you can ensure what happens to your child doesn’t have to become an additional tragedy in their life.

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