Q. Our son, Charlie, is 40 and has autism and is intellectually disabled. We were a bit older when we had him, and he is our fifth and youngest adult child. He resides with us in our home, but as we are getting older and having health issues ourselves, we are very concerned about what will happen to him should we be in a position where we can no longer care for him or for ourselves, or worse, if we both passed away. We have heard horror stories about the state stepping in and putting loved ones with autism in a home and we wouldn’t want that for Charlie, and I know he wouldn’t want that for himself. What types of planning can we do to ensure he is taken care of in the future? Can we make one of our other children an alternate guardian for him, as he is close with his older sister? Can he have a say in his planning, and how should we approach that? Thanks for your help!
A. Similar to your situation, Gayle Nobel, author of the book Space of Love: Understanding the Power of Thought and Wisdom in Living with Autism, was worried about what would happen to her adult son Kyle, who has autism spectrum disorder (ASD), when she is no longer alive. When she was a child, her brother Philip, who also had ASD, was placed in an institution. The family visited him occasionally, but she doesn’t remember her parents talking about him much. There was no discussion of what would happen to him should he outlive his parents. When her parents died in their 60s, Gayle had to go court to be appointed as her brother’s legal guardian. There was nothing in place for her to automatically take over, as the law generally does not provide any provisions for an alternate guardian to automatically take over upon the death of the current guardian.
“It felt like a kind of abandonment,” she says, “to let a government agency assign a stranger to make decisions for my brother.” When it comes to her son, the question is always, “(w)hen I’m not there, who’s going to have his best interest at heart?”
Gayle admits she thought about what happened to Philip when making choices for Kyle, her son with ASD. Memories of Philip and what might happen to him once she and Kyle’s father were gone, she says, informed her decisions. “I didn’t want to see what happened with Philip to be Kyle’s story,” she says. “So I kept him at home and tried not to think about it.” Still, she knew that she had to get what she wanted for her son in writing. Last year, Kyle moved out of her home with Nobel’s support and preparation. She chose an Independent Living Arrangement (IDLA) in a community of independently owned homes and hired an experienced attorney to prepare an appropriate special needs trust for Kyle.
Creating a Meaningful Life for a Person with Disabilities
As people with disabilities are living longer, mainly because of better health care resulting in increasing longevity, many families are scrambling to help them do so with dignity. The only way to ensure this happens is to plan in advance with the help of experienced legal and financial professionals.
The goals of effective planning for parents of a child who has disabilities (whether an adult child or a minor child) are many:
- to create or maintain for your child a meaningful and fulfilling life;
- to avoid institutionalization;
- to secure the legal and financial future of your child
Securing the Financial Future of Your Child with Disabilities
Because of my affiliation with Protection Point Advisors, a Registered Investment Advisor, I have access to a very robust and detailed financial planning program that creates a financial baseline for today and then projects, as accurately as possible, what the extra needs and expenses might be for your child with disabilities.
The software allows us to enter multiple “what if” scenarios to help parents see alternative scenarios and expenses should something expected or unexpected happen in the future.
Securing the Legal Future of Your Child with Disabilities
It is critically important for parents of a child with disabilities to line up in advance one or more trusted persons to care for your child and make legal and financial decisions for your child when you can no longer do so yourself. This can be very challenging for many parents, as not every person with a disability has a loving sibling or other relative involved or willing to be involved in their life.
Adding a Co-Guardian for Your Child with Disabilities in Lieu of a Successor Guardian
Many parents who are serving as guardians (and conservators) for their adult children with disabilities are surprised to learn that they cannot name a successor guardian to automatically take over when they are no longer able to serve as guardian. Virginia, Maryland, and DC do offer something called a “standby guardian,” who can be appointed to take over for a short period of time (60 days in Virginia, 90 days in the District of Columbia, and 180 days in Maryland) after the big death or incapacity of the guardian (or an adverse immigration action against the guardian), but the standby guardian must still go back to court within that short period of time to be approved as the actual guardian and to continue in that role. Instead of this cumbersome and expensive process, what we often do when parents are aging or facing disabilities of their own is go back to court to add a willing adult child as a co-guardian so that the co-guardian can seamlessly take over upon the death of the parent without having to go back to court again after the death or in capacity of the parent.
What if You Don’t Have a Trusted Alternate Guardian?
If you don’t have any trusted person to take over your role as a parent and caregiver for your child with a disability, then you should look into professional services such as group homes, which can typically be accessed through your local community services board. When creating a special needs trust for your child, if you don’t have a person readily available to fill your shoes, then you should look into the possibility of creating or using an existing Microboard or Self-directed Support Corporation. Both Microboards and Self-directed Support Corporations (SDSCs) are nonprofit corporations established by the family of a child or adult with a disability to provide for the child’s ongoing needs after the parent’s death. These organizations are intended to serve as support structures for persons with disabilities.
Both Microboards and SDSCs are set up as nonprofit corporations, usually with a board of directors comprised of family members, friends, social workers, or anyone else willing to be formally involved in the life of the person with special needs. There are also existing organizations that make it easier to set up one of these organizations or have an existing organization already set up, which can be especially important if your loved one with special needs doesn’t have a strong existing social network.
One such organization for Microboards in Virginia is Eli’s Village, which also runs the Virginia Microboard Association.
One such organization for SDSCs in Maryland is Joshua’s House.
Read more about microboards and options in the DC area in today’s Critter Corner.
Can People with Intellectual or Developmental Disabilities Participate in Their Own Planning?
Can persons with Intellectual Disabilities or Developmental Disabilities (IDDs) have a say in what happens to them? Absolutely! People with ASD and IDDs can and often do create powers of attorney and advance medical directives for themselves, and this is something we always encourage. Just because somebody has ASD or an IDD does not mean that they are incompetent for purposes of creating their own legal documents. They may still be perfectly capable of making their own decisions, perhaps with the support and assistance of their parents or other loved ones helping them think through the decisions they need to make.
Most adults with ASD or an IDD appreciate having autonomy and control over decisions that affect them; it is of course a great sign of respect to give them the opportunity to express their own wishes.
Of course, there are persons with ASD or an IDD who suffer from extreme intellectual limitations, sometimes unable to understand or speak at all, and people with these types of extreme disabilities will need to have a guardian and possibly a conservator appointed for them. Even then, people who know them well typically know their likes and dislikes that can help inform care.
Supported Decision Making Helps Those with IDD Make Important Decisions
Supported decision making is a process that helps people with IDDs make decisions about important life issues. A team of family members, friends, neighbors, professionals, and possibly other volunteers manage discussions to help the individual decide things about jobs, marriage, or housing. The process can also be used for end-of-life planning. For an excellent guide on supported decision making and how it works, please click here.
Trust Planning for Adults with Disabilities
The best way to ensure the ongoing support of a person with a disability is to use a special needs trust. A special needs trust has specific language designed to protect the trust assets in connection with medical assistance (i.e., Medicaid ) provided by governmental programs and ensures that the assets in such a trust are neither owned by nor controlled by the beneficiary, so the trust assets do not jeopardize the beneficiary’s means-tested governmental benefits.
There are three basic kinds of special needs trusts: first party trusts, third-party trusts, and pooled trusts. Depending on the financial and lifestyle needs of the beneficiary and their family, one of these trusts may be better suited than another.
The first distinction between them is based on where the money (or other assets) in the trust comes from. If the money comes from anybody other than the disabled person, the trust is a “third-party trust.” On the other hand, if the money is the disabled person’s money, then the trust must be a “first-party trust” or a self-settled trust. This includes assets that the person has a legal right to, even if he or she does not actually own the asset.
Third-party trusts can be either (1) stand-alone revocable or irrevocable trusts or (2) testamentary (typically written into a will but can also be written into a revocable living trust to take effect only upon the grantor’s death). There are also pooled third-party special-needs trusts managed by a nonprofit corporation. First-party trusts must be irrevocable and can be either stand-alone or pooled. Third-party trusts are not subject to Medicaid payback but first-party trusts are.
For more information, see the section on our website about Special Needs Trusts and make an appointment to see what is best for your personal situation.
Plan in Advance for Your Child Who Has a Disability
As you can see, it is imperative to plan ahead if you have a child with a disability! The attorneys at the Farr Law Firm are here to guide you through this process. Please contact us to make an appointment for an initial consultation:
Disability Attorney Fairfax: 703-691-1888
Disability Attorney Fredericksburg: 540-479-1435
Disability Attorney Rockville: 301-519-8041
Disability Attorney DC: 202-587-2797
About Evan H Farr, CELA, CAP
