Who Will Take Care of my Disabled Child When I Die?

As parents of children with disabilities age, thinking about who will take care of their children after they become disabled or die can cause significant anxiety.

Choosing a person willing to take on the responsibilities of caring for any child if a parent becomes disabled or dies can be daunting, but the challenge is compounded for parents of children with special needs who will require constant care and supervision well beyond their 18th birthdays.

That’s why it’s important to plan early. Below are some things to consider:

Have you engaged in estate planning?

If you are a parent of a child with special needs, you need special estate planning. Why? Because if you leave assets directly to your special needs child, either in a will or through the intestacy statutes if you die without a will, the inheritance your child receives can jeopardize his or her ability to receive benefits under government programs such as Supplemental Security Income and Medicaid.

Leaving assets to your child in a special needs trust can help preserve your child’s eligibility for public benefits. You can read answers to some frequently asked questions about special needs trusts by clicking on the link.

Are your resources sufficient to provide for a child who will never be financially independent?

Certain public benefits may cover basic treatments or therapies for your child; however, assets placed in a special needs trust can be used to provide for supplemental needs and treatments that will enhance his or her life. Therefore, a long term financial plan in place is crucial for parents of children with special needs.

You may wish to work with an advisor who can help you determine the types of benefits for which your child may be eligible, such as SSI and Medicaid, and plan financially to ensure that a special needs trust is funded with sufficient assets to provide for other long terms costs of caring for your child when you’re gone.

There are also some free online resources that can calculate the amount of resources that will be necessary to provide the level of care and comfort your child is accustomed to receiving. For example, Merrill Lynch Wealth Management has a free online special needs calculator and Met Life has one too.

These calculators will estimate how much financial support your child will need during his or her lifetime based on information you provide about anticipated income and expenses. Once you know that, you can start saving or perhaps look into acquiring an insurance policy to ensure that sufficient assets will flow into the special needs trust you’ve created for your child.

Have you made living arrangements for your child?

Some parents assume family members will care for their child with special needs without ever discussing it with those individuals. Even if the issue is discussed, the conversation may be awkward, with some family members not being honest for fear of upsetting the parent.

While certain family members, such as siblings, aunts, or uncles, may be willing to take on the responsibility, other’s may find they are ill-equipped personally or financially to handle the challenges of caring for a child with disabilities.

It’s important to have an honest discussion with potential caregivers about whether they will realistically be able to take on the responsibility of caring for your child.

  1. If your child requires round the clock care, will the potential giver be able to provide that care without an economic impact to their family?
  2. Does the potential caregiver have other commitments that will prevent him from devoting the time and attention your child needs?
  3. What would happen if the potential caregiver became seriously ill or faced other unforeseen circumstances that made it difficult to keep their commitment?

That’s why it is also a good idea to have a backup plan. While living with a family member may be ideal, as licensed group home or assisted living facility, may be a good choice if no family members are available. Exploring all your options will give you peace of mind.

Have you written a letter of intent?

Every parent worries about whether their children will be well cared for after they’re gone, but the worries are compounded for parents of children with special needs who lack the capacity to communicate their needs to caregivers.

As a parent of a child with special needs, you know their needs and desires, likes and dislikes and information relating to the care and services they are receiving. But what happens if you are no longer living? How can you ensure that your child will be well cared for by the person who assumes the role of their guardian when you’re gone?

That’s why all parents of children with special needs should also prepare a Letter of Intent.  A letter of intent is not a legally-binding document. Rather it is letter that provides valuable information about your child’s life to help guardians, trustees and courts understand your hopes and desires for him or her. You can read more about writing a letter of intent by clicking on the link.

Have you organized your important documents?

If your incapacity or death required your loved ones to locate your important personal information, financial papers, estate planning documents and insurance policies that may be essential for providing for your child, would they know where to look?

Rummaging through someone’s disorganized records is not an enjoyable task in good times, let alone in times of grief. So one of the greatest gifts you can give your family is having all your personal and financial records in order so that they can be easily accessed if and when needed.

This Personal Records Organizer (pdf), as well as the following tips, will help you get started.

Imagining the day when you will not be around to take care of your child can be heartbreaking. There’s probably no one who’ll love and care for your child like you do. But one of the greatest gifts you can give your child is putting a plan in place to make sure your child’s needs will always be met, even after you’re gone.

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