As a parent to an autistic child, you wish you would be around forever to take care of them. Unfortunately, none of us have that option. That is why we have to start today to secure our children’s future. So what can you do today to prepare for your autistic child’s future and ensure they will be taken care of in as an adult?
Determine level of need based on your child’s capabilities
The first thing you need to determine is what type and how much help your child will need in the future. Autistic people have a wide range of abilities. Those with milder autism (or what may have originally been diagnosed as Asperger’s Syndrome) may be able to function independently as adults. For others with moderate to severe conditions, they may need extensive help throughout the rest of their lives.
Finding a good estate lawyer and financial advisor
An estate lawyer and a financial advisor will be two good individuals to consult during this journey.
An estate lawyer can advise you about special needs trusts, wills, power of attorney and more. The lawyer also should be an expert in special needs law, so they can guide you through the intricacies of requirements related to government benefits, American Disabilities Act and more.
To find a lawyer, you can ask for recommendations from your local advocacy organization or other parents of special needs children that you know. The Special Needs Alliance also has a “find an attorney” by state of lawyers who specialize in special needs law.
You also may want a financial advisor who can help you with a financial plan and ensure you have the right investments that will help you reach your financial goals. One of those goals will be to plan and secure your autistic child’s future. But how can you find a financial advisor you can trust? This article from Experian provides some good information. It suggests you take a five-step approach:
- Know your financial goals
- For the financial advisors you are considering, find out their credentials. Are they a certified financial planner, chartered financial analyst, chartered financial consultant or another qualified advisor? What is really important is that they are a fiduciary. That means they legally must put your financial interests above their own.
- Ask your family, friends or work colleagues for recommendations (at least three) and check out the advisor’s online reviews.
- Send an email to them with questions before doing an in-person interview. Ask if they are a fiduciary, how they are paid, their credentials, investment philosophy, investment products they generally recommend and what minimum investments they require.
- Look for any red flags when you meet with a financial advisor in person. Those can include the advisor not listening to you, pressuring you, or making you feel uncomfortable. Instead, you want an advisor who really listens to you and will take the time to help you develop a plan that will assist you in reaching your financial goals.
Planning to secure your autistic child’s future
So what should you do to create a plan for your autistic child’s future? Here are eight steps to follow to develop your plan.
1. Put your estate in order
Do you have a will, power of attorney, health care proxy and other necessary documents that will provide direction upon incapacitation and death? Do you have adequate life insurance with beneficiaries named? These are foundational documents of an estate, and especially important to have for your autistic child.
You also want to educate family members about leaving gifts or inheritance for your autistic child, especially if you anticipate they may need to rely on government benefits for living expenses when they are adults. To be eligible for many of these benefits, your child will be limited in how much money they may have (see below). If you have a well-intentioned grandparent or other family member who would like to leave money to your child as an inheritance, have them work with their attorney to ensure it is gifted in the right way. For instance, money could be left to your child’s special needs trust instead of to them personally.
2. Determine if you need to establish guardianship or supported decision-making
When your child is under age 18, you need to name a guardian who will take care of them in case you die. If your child is over the age of 18, it’s important to determine whether your child has the ability to make their own financial, medical and other major life decisions. Otherwise, you may need to establish a legal guardianship of your child. If your child is more capable but still needs help making important decisions, then supported decision-making may be a good option.
With supported decision-making, your child selects a group of trusted advisors, which can be family, friends or professionals, to help them make major decisions. This is less restrictive than a guardianship and gives your child more control over their affairs. Yet, they still receive help to do so. Each state in the United States has their own rules for this arrangement. Want more information? Check out the National Resource Center for Supported Decision-Making.
Another option that still provides your child with more control but allows you to help them is for them to give you power of attorney and a health care proxy. This will enable you to assist them with financial and medical services but doesn’t take away their ability to make decisions and control their own affairs.
3. Consider a special needs trust and/or ABLE account
A special needs trust fund allows you to set up a trust with life insurance proceeds or other money that will help provide for your child when you no longer can care for them.
There are three types of special needs trust funds:
First Party or Self Special Needs Trust Fund
This type of fund is created by assets owned by the person who has autism, and they are the beneficiary. These could be from an inheritance or another event such as a personal injury settlement. The fund must be created when the person is under 65 years of age and is considered irrevocable or cannot be changed. When the person dies, payment to Medicaid is required before distribution to anyone else.
Third Party Special Needs Trust Fund
This fund is created by assets owned by someone else other than the person with a disability, such as a parent, grandparent or other person. This can be established either during the creator’s lifetime or as a part of their will. It is managed by someone other than your child, and it’s not considered their asset. That means they remain eligible for government assistance that requires them to have limited assets. This type of fund does not have to pay Medicaid upon the beneficiary’s death. Instead, the remaining funds can be distributed to whomever the creator designates.
Pooled Special Needs Trust Fund
This type of fund is usually run by a nonprofit organization that acts as the trustee. For this fund, the organization “pools” assets from many different people into a master trust, and then it manages sub-trusts for the various beneficiaries. This type of trust can be helpful for those who do not have many assets to set up a trust individually for their child. This type of trust has a similar requirement as the self-special needs trust because it requires Medicaid be paid first upon the beneficiary’s death.
You will definitely need the assistance of a lawyer to establish a trust fund. For more information about special needs trust fund, check out this blog post.
Another option to provide funds for your child is the Achieving a Better Life Experience (ABLE) account, or the so-called 529 for people with disabilities. ABLE accounts can be established for individuals who are diagnosed with a disability before age 26 and who meet the eligibility requirements to receive Medicaid, Supplemental Security Income (SSI) payments and other government benefits.
Individuals who are eligible for government assistance can only have about $2,000 in assets. Funds in an ABLE account do not count toward those assets. They can be used for broader living expenses than what is covered by government benefits. Up to $15,000 per year can be put into an ABLE account. That can include money transferred from a trust fund.
A disabled person can benefit using an ABLE account because they can use a debit-like card to draw funds from the account. This gives them more autonomy over their own finances.
4. Develop a Letter of Intent
A letter of intent provides valuable information and guidance to family and future caregivers for your child. It gives information about your child’s preferences, daily routine, wishes and more. This is not a legal document (although the name makes it sounds like it is). Parents should draft the letter and keep it with their estate materials. It’s important to revisit the letter every couple of years and update it. This is key step for your autistic child’s future.
5. Understand the rules of government assistance
The U.S. government provides a variety of assistance. This is through Medicaid, SSI, Social Security Disability Insurance Benefits (SSDI), Supplemental Nutrition Assistance Program (SNAP) to help those disabled with food and living expenses. These have strict financial and other requirements. Ensure that you understand the rules for each of them, especially the limit of financial assets a person can have to quality for assistance. Usually, a person can have no more than $2,000 in their own name. If your child has too many assets, they cannot quality for assistance when they are an adult.
6. Plan for housing
It is so important that you plan where your child will live when you are no longer able to take care of them. You have several options to consider if you do not believe your child will be able to live independently:
If you own your home outright, you can leave it to your child’s special needs trust fund. This will allow your child may continue to live there. Keep in mind that the trust also will need enough funds to cover the upkeep and maintenance of the home. You also will need to be sure you’ve appointed a caregiver to help your child (if necessary).
You also could purchase another home such as a condominium or house in your child’s name. Owning a house will not affect eligibility for government assistance.
Some disabled adults lived together in group homes with a counselor or other person who helps them manage their daily activities.
Sometimes, families of adults with disabilities work together to create a co-op (or cooperative) agreement living arrangement for their loved ones.
The U.S. Department of Housing and Development offers help in paying rent for disabled people. This is known as the housing choice vouchers, or Section 8. The waiting period for receiving a voucher is usually long.
For those with severe disabilities, institutions are an option. This article from The Children’s Hospital of Philadelphia has some good information about this type of living arrangement.
Assisted living facilities also are a housing option for those who need care throughout the day and night.
7. Consider what post-secondary education your child is capable of completing
Ideally, you want your child to be able to make their own income to the best of their capabilities and be able to find meaningful work. This brings them greater quality of life. Therefore, consider what type of post-secondary education your child may be able to achieve. Could they go to a trade school or even college? If so, be sure you are planning on how to cover those expenses.
8. Help them obtain a job or even create one for your young adult
As your child grows older, you can help them obtain a job in high school or right after high school. This will make sure they are getting some work experience. Your local Vocational Rehabilitation can help with job coaching and planning for post-high school education. Some parents even create businesses that will employ their adult with autism.
Additional Resources
If you want to dive in more deeply to preparing for your child’s future, check out these resources.
What will happen to my Special Needs Child when I am gone: A Detailed Guide to Secure Your Child’s Emotional and Financial Future (affiliate link)
The Loving Push, 2nd Edition: A Guide to Successfully Prepare Spectrum Kids for Adulthood (affiliate link)
Taking the time today to focus on making a plan and securing your autistic child’s future is one of the most important things you can do. Putting these eight steps into action will help you know that your child will be well cared for when you are no longer able to provide that care yourself. Have you taken additional steps to prepare for your autistic child’s future? If so, leave a comment so that we can share and encourage each other on this journey.
