I am the mother of a 17 year old with autism, and I also happen to be a lawyer. You might think my professional background would make autism future planning easier, but it didnt.

When it came to predicting and planning my sons future, without me, I was not a lawyer – I was a terrified mother.

And I was confused.

What future was I planning for?

One where my son went to college and lived independently? Or something else?

If this is where you are right now, this is normal. None of us can predict exactly what our child will need years from now. However, we can take steps to create a foundation of support and stability while giving ourselves some peace of mind today.

Below are some steps you can take to help your child as they age and plan for their future. 

The Importance of Professional Guidance

Before diving into details, know that professional guidance is crucial when planning your childs future. Legal, financial, and support systems are complex and vary by state. Without expert help, mistakes can lead to lost benefits and missed opportunities.

Financial Planning

A strong financial foundation is essential to ensuring your childs long-term care and quality of life. Heres how to start:

Special Needs Trusts

A Special Needs Trust (SNT) is a trust that holds assets like savings, inheritances, or life insurance proceeds in a way that protects your childs eligibility for government benefits and prevents the state from reclaiming unused funds after your childs death.

Without a properly created SNT, even a small inheritance or financial gift could disqualify your child from government programs.  Therefore, it is critical that you seek legal counsel experienced in creating SNT. 

Life Insurance

Once the trust is in place, the next step is ensuring its properly funded. One way to do this is by securing a life insurance policy and naming the SNT as its beneficiary.  By doing this, you ensure that the policy proceeds go directly into the trust upon your death, bypassing probate and avoiding complications.

ABLE Accounts

Achieving a Better Life Experience (ABLE) accounts allow individuals with disabilities to save money tax-free, up to $17,000 annually (as of 2024). These funds can be used for qualified disability expenses, including housing, education, and healthcare. 

Government Benefits

Government benefits like Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI) and  Medicaid provide crucial support for individuals with disabilities. Applications for these benefits can be complex, so gathering documentation early and seeking professional guidance is highly recommended.

Investment Strategies for Long-Term Care – (suggest deleting)

Work with a financial planner to develop an investment strategy with a diversified portfolio. Regularly review the plan to ensure it remains aligned with your childs evolving circumstances.

Legal Considerations

Legal arrangements ensure your childs rights are protected and their needs are met as they transition into adulthood.

Guardianship and Conservatorship

Guardianship or conservatorship can help you continue making certain decisions on your childs behalf once they turn 18.  However, the laws and options vary by state.

For example, in Connecticut (where I live), guardianship is only available to individuals with an IQ of 70 or below.  Parents of children with an IQ above 70, therefore, need to pursue conservatorship to make decisions on behalf of their child.  

Letter of Intent

The  Letter of Intent is an informal document that provides future caregivers with detailed instructions about your childs routines, preferences, and needs. While not legally binding, this guide ensures your childs care reflects your love and understanding.

Power of Attorney

POA is a legal document that allows a trusted individual to manage your childs financial or legal matters. This is particularly important if your child has the capacity to make some decisions but needs support in others.

Healthcare Directives

To continue advocating for your childs medical care after they turn 18, you will need to establish a medical Power of Attorney (to make decisions on their behalf), a HIPAA release (to access medical records), and an advance directive (to outline treatment preferences).

If your child is unable to sign these documents due to their disability, you may need to pursue guardianship or conservatorship.

Will and Estate Planning

A comprehensive will is essential to designate guardians, allocate assets, and avoid unintended consequences like disqualifying your child from benefits. 

Educational and Vocational Planning

Setting your child up for educational and vocational success helps them build confidence and independence.

Life Skills Development 

Starting life skills early and including them in your childs daily routines and education can make a big difference. These skills prepare your child for the future and sets them up for a smoother transition into adulthood.

In addition (and your school district may not be telling you this), life skills can be added to your childs Individualized Education Program (IEP) at any time with specific and measurable goals.

Transition Planning in IEPs

If your child has an Individualized Education Program (IEP), ensure that transition planning is included by age 16 (or earlier in some states). This plan should outline goals for post-secondary education, vocational training, and independent living.

Post-Secondary Education Options

Explore post-secondary programs tailored to individuals with autism, such as community colleges with supportive services or specialized academic programs.

Vocational Training and Employment Support

Vocational training programs focus on hands-on learning and can be found through schools, local organizations, or disability services. Employment support services like job coaching and supported employment can help your child learn job tasks, handle responsibilities, and stay successful. Contact your states vocational rehabilitation office or local disability organizations to explore these programs. 

Living Arrangements

From independent apartments to group homes, housing options vary widely.  That is why exploring these options with your child, prior to your child turning 18, is important. 

Supported Living Programs

Supported living programs offer flexible, individualized support for adults with autism. They can provide assistance with daily living tasks while fostering independence.

Group Homes

For many parents, the idea of a group home can feel like a worst-case scenario but the reality is group homes often provide essential care, structure, and community opportunities for individuals with autism.

With your child, visit potential homes in person, speak to staff and residents, and ask questions about care plans, staff turnover rates, and daily routines. 

Support Networks

Your childs well-being depends on more than just financial and legal planningit also requires a strong support network.

Building Community Connections

Encourage your child to form relationships with neighbors, coworkers, and community members. These connections can provide emotional support and practical help in emergencies.

Family Involvement and Emergency Contacts

Identify family members or friends who are willing to serve as emergency contacts or assist in caregiving roles. Maintain an up-to-date list of these individuals for future reference.

Professional Support Teams

Assemble a team of professionals, including therapists, educators, financial planners, and legal advisors, to support your childs development and address challenges as they arise.

Moving Forward

Taking these steps may seem daunting, but you do not have to do everything at once.  Start with one small step, like getting a life insurance policy.  By addressing your childs future needs, one step at a time, you are building a foundation of stability, security, and opportunity for them to thrive. 

Originally published in the Autism Parenting Magazine.

Free Resource: Taking the Fear Out of Family Planning Workbook.