This is an excerpt from Sarah Carrasco’s book, “The Autism Helpbook”, to be released in January 2018, where she breaks down in everyday language, a guidebook for parents with autism. Pictured is a beautiful pic of Sarah and her son, David. They are an inspiration to me.
“Injustice anywhere is a threat to justice everywhere.”
Dr. Martin Luther King Jr.
Learning the law as it pertains to children with autism is not as daunting as it may seem. Over the years, I have learned disability law in increments; I didn’t tackle it all at once. There are many aspects of the law that you will need to know but trust me, you won’t need a law degree to grasp the basics. This chapter is a brief rundown of legal documents and statutes; knowing even our child’s basic rights will help ensure they are protected while we are able to care for them and when we are gone. Our children face great injustice at times and learning the law will help protect their rights and secure their possessions as they enter adulthood.
On your quest to provide your child with the best life possible, you will need to go out in the world (on online) and find your tribe. It is in the parent groups and by having conversations with people who are in our shoes that we learn the most. Your allies, your mentors and your real life heroes will be found in the autism community. While it takes time, it is important to get out and socialize when possible and make connections on Facebook or online parent groups. Some of the most valuable lessons I have learned were from speaking to other parents and attending autism conferences. When I attended the TACA conference for Chapter Coordinators in October of 2016, I knew I had found my tribe. TACA is made up primarily of volunteers so every person I met is genuinely concerned about the wellbeing of people with autism and their families. At the conference, we were able to hear speakers from all over the country and learn about a variety of topics. There were classes on diet, genetic mutations, digestive system issues, neurological
issues, bullying, RPM and everything in between.
I learned quite a bit at the conference but the most valuable lesson I learned was on the importance of Special Needs Trusts. As I sat through the class on Special Needs Trusts and Guardianship, I felt like I had been proverbially slapped with a dose of reality. Every child (unless they are extremely high functioning) with autism needs to have either a Special Needs Trust established or an ABLE account. Additionally, guardianship of the child (in the case that you can no longer care for the child) must be established, in writing, with an attorney.
In addition to legally binding documents such as a Special Needs Trust, there are many legal considerations parents must be mindful of. As an advocate, I am not able to relay details of the cases I have settled, I can, however, state that there are serious legal issues revolving around people with autism and victimization. There are legal matters pertaining to schools, public places and our children’s legal rights under IDEA and the ADA.
You do not have to be a lawyer to understand the law or to defend your child’s rights. Once you know the law, you will start to see cracks in the system. School principals rarely read the ADA and IDEA and will try to circumvent the law in some instances. Unless a police department makes a point to train their officers in the ADA, police officers rarely know that our children have different rights than the average citizen under IDEA and the ADA. When you take your child to an amusement park, the sixteen year old working the rides probably hasn’t read the ADA and therefore, cannot provide your child reasonable accommodations.
Knowing the ADA, IDEA and the basics of Special Needs Trusts and guardianship has the potential to change the course of your child’s life. For years, I operated under the assumption that schools, public entities and police departments were well versed in the ADA. It wasn’t until I started doing advocacy work that I realized the people trying to marginalize or prosecute people with autism had NEVER read the ADA. As parents, we can’t assume that the professionals we encounter have a solid background in disability law.
This chapter will give you the rundown of disability law and trusts. As time goes on, the links provided in the citations will prove to be useful. In the years to come, if legal matters arise, know that there are (often) inexpensive ways to address these matters. By accessing the links provided, reaching out to disability law attorneys, reading law books (so fun) and taking courses on the ADA, you will know the law better than most of the professionals you encounter which will give you a leg up.
Moving forward, there will be times when you need to know your child’s rights because the professionals you encounter may not. In order to successfully make our way through the maze of disability law, we need to get organized so here it is, the list of things parents and guardians need to know for chapter nine:
1. Learning the Basics of Special Needs Trusts and Guardianship
2. Making the Most of the American’s with Disabilities Act (ADA)
3. Addressing Victimization and Criminal Matters
Special Needs Trusts and Guardianship
Again, the TACA conference was an amazing experience. When I say I found my tribe, by that I mean, I found people who are on the same mission as me. I found people who gave up their weekends and free time to help families affected by autism. I met people who, like me, chose to forego vacations, fancy clothes and social outings in order to afford biomedical interventions. I found people who help in the autism community with no expectation of reward, praise or reciprocity. It is a very unique group of people who would sacrifice their time and money for the good of others but at the TACA conference, I met nothing but these people; that is why they are my tribe, we give without expectation and without judgement.
Of the many people I met at the conference, one of the people who stood out the most was a man named Marc Ang. Marc is a Financial and Estate Planner, who founded Mangus Finance in California. He was at the TACA conference providing information on Estate Planning for families affected by autism. I asked him a million questions and being the wonderful person that he is, he took time out of his day to help me better understand the complexities of estate planning for children with autism. He is in California and if you are local, he can help provide you with information pertaining to trusts and if you are out of state, you can access his website at www.mangusfinance.com. The website offers a life insurance calculator and estate planpreparedness quiz for parents; these tools can help you clarify the type of estate plan you will
need and how much money your child will need as an adult. 
Marc, like every other person I met at TACA, just wants to help our community and improve the lives of people with autism. His website offers valuable information for parents at no cost and will provide you with enough information to start setting up the framework for your child’s estate. When it comes to estate planning, it’s important to find someone to work with who is a good, decent human being. These are complex issues and finding the right person to walk you through it is a must. If I were in California, Marc would be my go-to person; he’s smart, organized and caring, just the type of person you need to help guide you through estate planning.
Marc and other people who work in his field can help guide you through financial planning and protecting your child’s assets, and in the case that you need a trust, an attorney will help you with that process.
There are two primary factors when determining which type of trust your child will need; your child’s ability to care for themselves and your assets.
● If your child is high functioning end of the spectrum and is on the road to independence, a special needs trust or ABLE account may not be necessary. However, if they will be eligible for government benefits, trust planning is needed.
● In the scenario that your child with autism is unable to care for themselves and you have few assets, you can focus on guardianship (which I will get to later) and setting up an ABLE account. ABLE accounts were established under the Achieving a Better Life Experience Act of 2014. This type of account allows parents or family members to put aside up to $100,000.00 in an account to be used for the child’s care. An ABLE account is not taxed and will not impact SSI benefits as long as the account stays under $100,000.00. You can learn more at, http://www.ablenrc.org/about/what-are- able-accounts .
● In the scenario that your child with autism is unable to care for themselves and you have a significant asset base (your assets exceed $100,000) – this applies to any homeowner, even if your equity is low – and your child is considered disabled, you will need a Special Needs Trust for two objectives: to avoid your child’s government benefits threatened and your assets going to probate court and falling into a money pit.
● As an example, if your home is worth $300,000.00 and you owe $150,000.00, the assets that will be counted against your child’s SSI will be $300,000.00. If you put your home (using this example) in a Special Needs Trust, your child can continue to live in the home and the value not be counted against their SSI and Medicaid (assuming they receive Medicaid benefits).
● If your child directly inherits the home and it is not in a trust, Medicaid can count the real property value of $300,000.00 against the child’s Medicaid, triggering a payback. In summary, if your child inherits a home that is not in a trust, they will lose SSI, Medicaid and be expected to reimburse Medicaid.
If you find yourself on the cusp of either needing a Special Needs Trust or ABLE account, it’s important to reach out to attorneys in your state and clarify your state’s laws pertaining to disability related trusts and the maximum amount of assets your child can have without triggering Probate Court (Probate Court is a specialized type of court which manages the debt and property of the deceased). To figure out where your state’s thresholds are, you can refer to this handy list: http://www.mangusfinance.com/probate-state- by-state- thresholds-limits/
Once you have established whether you need an ABLE account or Special Needs Trust or both (you may want to complete the estate plan preparedness quiz at mangusfinance.com to make this determination), you will want to reach out to an attorney who works specifically with special needs planning and estates.
Although none of us want to think about what will happen to our children when we are gone, it is important to plan for these things. There are very few resources for adults with disabilities and the little help that is available to them is often not enough to cover the cost of food, clothing, recreation etc. Most of us don’t have much money in the bank but the little we do have and the equity in our home (for example) can be allocated into a trust and used to provide for our children with autism when we no longer can. This is why it’s important to allocate some portion of your monthly budget into life insurance, as this is the most common funding mechanism for a special needs trust for middle income and lower income families. (the life insurance calculator on mangusfinance.com can help you determine the amount your child needs)
Special Needs Trusts are not cheap, they range from $2,000.00-$3,000.00 on average. But remember that probate costs are greater, not only with the potential loss of government benefits, but probate itself is pricy. In California, the cost of probate for a $500,000 home clocks in at $13,000 just for base lawyer fees. This does not include the lost time and potential ensuing legal battles.
If you cannot afford to have a trust drawn up, your disability resource center may offer financial help (on rare occasions) or you can reach out to your local Autism Society, ARC or even Parent to Parent for ideas on how to approach this in the least expensive way. It’s not always easy for us to come up with the money for these things but hey, not much about autism is easy and yet we persevere. Never give up.
In addition to setting up Special Needs Trusts and protecting our kids financially, we MUST establish guardianship of our children in the event we can no longer care for them. As I understand it, each state differs slightly between the definition of guardianship and conservatorship. In most cases, a guardian oversees the needs of the person with autism (or other disability) and the conservator oversees all financial matters. However, in some states the conservator is both guardian and financial conservator because why make it easy right?
For the sake of this topic, we will define guardian as the person who cares for the child and conservator as the person who oversees financial matters. Once you start the process of guardianship and conservatorship, your state’s definition of guardian and conservator will be made clear either by the court documents you file (you can Google guardianship in your state and links to applicable documents should come up) or by the attorney who helps you file the legal paperwork involved.
It is critical to establish a guardian for your child. It is not expensive and will eliminate the possibility of your child ending up in state run care (if that is not your wish). Guardianship of a person with autism is dependent upon the affected person’s ability to make medical and financial decisions for themselves. If a person with autism is able to care for themselves and they can get to work, keep up with housework, grocery shopping etc. they do not require a guardian. If, however, a person with autism is a minor or are unable to care for t heir own needs as an adult, guardianship should be established by the parent or caregiver. The people best able to care for our children are most likely family members and friends, choosing a guardian for our child with autism should be our choice and not left to the courts. We know our child best and can determine who would provide them with the best care. In the case that you do not have family or friends to assign guardianship to, the courts can assign a Public Guardian or county agency can be named as the guardian. Many of us struggle with who to ask to be our child’s guardian; if you do not
have family or friends to select from, maybe consider an aide from school or therapist you trust.
Sarah Carrasco is a mother of a child with autism. She is also an accomplished writer, based out of Colorado.