How Parents Of Adult Children With Special Needs Can Prepare For Life After Death – And What Happens When The Big Breaking Point Is Reached
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How Parents Of Adult Children With Special Needs Can Prepare For Life After Death – And What Happens When The Big Breaking Point Is Reached

Back in 2016, more than 40 million people in the United States suffered from some kind of disability. These can often prevent them from making decisions, living independently, and financially providing for themselves. Parents may wish to step in at times, but all families should prepare for the day in which they can no longer do so.

Here are three ways in which parents of adult children with special needs can adequately prepare for life after death:

Establish Legal Protections

In order to qualify for SSI, an individual must have less than $2,000 in assets. Additionally, a child who is either designated to be a life insurance beneficiary or is left an inheritance could end up being disqualified from receiving SSI benefits. This means that the adult child could end up being cost hundreds of thousands of dollars every year. Establishing a special needs trust is a great way to lock in those assets for someone who suffers from a disability while, at the same time, not costing them their government benefits.

Create a Support Team

Determine exactly who will show support for your loved one after you’ve passed away, such as a guardian and a trustee. Whoever suffers from the disability should also be involved in the decision-making process as well. Compose a letter of intent that lets people know exactly what should happen after you’re gone, making sure that you’re clear on all of your instructions.

Think About Financial Implications

A great deal of security will often be provided by entities such as Medicaid, SSI, and SSDI. Additionally, families will also be able to supplement resources from the government along with their own funds, or even purchase a life insurance policy that will help to provide income for their child once the parent passes away.

There also will come a time when that big breaking point is reached, causing caregivers to begin experiencing a slew of emotions. Some of what could lead to that breaking point includes the following:

Waiting to Receive Help

The day before their 22nd birthday, adults with disabilities no longer receive any guarantees for assistance by the state in which they currently reside. On top of having to be placed on a long waiting list for state services, this age also means the end of school for them, which is one of the big reasons those who are parents of disabled adults seriously lack all of the assistance that they require. The list, which is known as the Prioritization of Urgency of Need for Services, must be applied for through a regional service coordination before families can be placed on it.


The type of care that parents provide for their children, especially those who need constant attention, generally comes without the proper support. This can cause both the exhaustion and stress of providing such care to affect the overall health of the parents, especially since most people with disabilities continue to live with their parents even after they’ve reached adulthood. Even worse is that those families who provide care for disabled adults often do not receive compensation, which can create even more stress. Essentially, parents reach the point of desperation whenever they receive no help.

Burden of Caring

Caring for a child who suffers from a disability, whether it’s developmental or intellectual, is a task that provides parents with a real purpose, as well as becoming their overall life’s work. This can get to the point where many parents feel that they are the only ones who can perform the job correctly rather than thinking of relying on someone else to do it.

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