If you believe your child will need assistance managing his life, whether it’s financially or practically or just in a specific area like vocation, you may want to consider contacting a disabilities attorney to help you arrange for these lifelong needs.
The Social Security Administration has some programs that provide benefits for individuals with disabilities who are unable to work and/or who have limited income and resources because of a disability. This has to be documented by professionals, and I have helped many receive these benefits. Even children who live at home can get regular payments that help with their care. The rules are complicated (as is the paperwork) and the assistance given depends on the child’s age (under or over eighteen), employment—even part-time—and any assets that are in his name. So make sure you thoroughly understand your child’s options in order to make the most educated long-term plan.
You can also set up health insurance and life insurance plans for your child, but these vary widely, so again, the best way to assure that everything is set up the way you desire is to seek help from a qualified attorney.
The Bad News
Regrettably, as we mentioned in the chapter about living arrangements, there is a lack of high-quality community housing and vocational programs for people with disabilities, and I have seen a number of “work training” programs that I consider to be demeaning and/or unsatisfying for adults on the spectrum. Further, with the growing number of kids diagnosed with autism who are reaching adulthood, we’re seeing a growing crisis in this area. Both residential options and work opportunities are limited, and we desperately need more research and intervention in these areas.
Here are some concerns you need to be aware of as you’re planning for the future:
• Many residential care facilities have long wait lists. Especially the most desired ones. Homes that have few people or even just one person with a disability are in demand. Start looking around now. There may be places close to your hometown that offer a nice environment for your child. And if you can’t find anything, you may want to consider making plans to develop such a setting. We’ve had many families who worked with state agencies to set up a situation that they and their child felt good about. Preplanning is essential.
• Unemployment rates for people with disabilities are high. I talked about this in the chapter on jobs earlier in this section, but it’s something you need to be aware of when considering your child’s financial future. Try to get your child involved in some sort of regular job—even if it’s a summer job—during adolescence. As it would for any child, it will teach him how to be responsible and follow a schedule, and you can even work with him to understand how to deal with finances when he gets a paycheck.
• If not done properly, estate planning can actually hurt your child. In some cases, money you leave for your child can result in government money being cut back, so be sure to have a disabilities attorney explain how to develop a will that allows your money to supplement, not supplant, your child’s government-paid benefits. Again, you need a professional trained in estate planning for families with special-needs issues.
Fortunately, there are things you can do to make sure that your child will be well taken care of in every way, even after you’re gone. Read on for some more general considerations.
Plan, Plan, Plan
Ask yourself if the life your adult child is living is a life you would like. I have visited many residential facilities over the years that I couldn’t wait to get out of. Some have too many residents packed into dormlike halls with no pictures on the walls, horrible food, and staff who sit around chatting with one another instead of interacting with our kids. Other residential facilities are beautiful, provide lots of recreational opportunities, and have dedicated staff who are eager to work on improving the residents’ communication, daily living skills, socializing, and so on—but these types of settings are rarer for one reason: they cost more.
When you plan for your child’s future, think about every aspect of her life and what would make her happy, then put effort into setting it up that way. Don’t forget about anything: exercise, diet, hygiene, clothing, her likes and dislikes, leisure activities, work, functional activities, compatible roommates, behavior programs, therapies, educational programs, medical care, and so on. And then spread the word so that you can get together with other families, community members, politicians, and whoever will listen to develop these types of settings. The mere fact that parents have to worry about what will happen to their children after they die means that we, as a society, are not doing our part. Parents have enough stress without having to worry about their child’s quality of life after their deaths. We should all be working to make sure that every young adult on the spectrum can have not just an okay life but a fabulous life throughout her adult and more advanced years.
As I mentioned above, if you don’t have a will, and you do have some assets, your child may inherit property that will end up being used to provide care that the government would otherwise provide. You need to consult an attorney to make sure your assets are a help, not a hindrance, to your child.
If you have definite ideas about the living conditions you would like your child to have in the future, make sure you have an attorney help you make them happen. Also, if you’re worried about the high price of attorneys but want to donate your assets, many organizations have attorneys on staff or volunteer attorneys who will help you arrange the donation without having to hire your own attorney. I know one family who donated their home with the stipulation that their child, and three others with disabilities, could live there throughout her life. This arrangement provided a home setting, and the government paid for the staff to care for their child and her roommates.
In addition to physical living space, if your child will not be completely independent as an adult, you’ll want to choose someone you totally trust to care for him. You may need to go to court to ask that that person be appointed guardian after you and your spouse die or can no longer care for your child. Placing the assets in a special-needs trust (SNT) (see legal section that follows) provides an added layer of protection. The guardian and the person who cares for your child can be different people, which may be better, depending on your child’s individual needs and situation. You’ll sleep a lot better once you’ve settled on someone for this responsibility. Most often it’s a sibling, but it doesn’t have to be if your child with autism doesn’t have a sibling whom you trust to do this. I’ve seen people settle on a close family friend, a cousin, and even a caregiver who had taken care of the child in a way that the family felt was compatible with their values. People often leave assets to the guardian specifically to be used for the person with disabilities, so that money isn’t taken out for expenses that the government would pay. However, if you do this, it’s very important that you fully trust this person you’ve designated as the guardian.
Advocate for the Best Living Arrangement
As we mentioned in Chapter 3 in this section, there is a variety of possible living situations for your adult child, so make sure you’ve really looked around and made yourself familiar with what’s available. Care facilities vary so much in regard to number of residents, supervision, amount of interaction between employees and residents, location, options for recreational activities, and so on. You want to find the best possible arrangement for your child while you’re still around to make the decision.
It has been my experience that just as with educational programs, the best living conditions are when the parents have advocated for a specific arrangement for their child. We work with adults whose parents have provided them with the opportunity to live completely independently in their own homes, whether they’re paid for by the family or by the state. Many states have regional centers or specialized offices that make these arrangements for individuals with disabilities who can’t live alone. We work with adults whose families have created state-paid programs where their adult child lives in a beautiful community home, with a p
rivate bedroom, and with typical peers. They have daily fun activities, cook with their roommates, and some have part-or full-time jobs. In short, they’ve arranged for a great life for their children.
Again, a few families I know have given community homes to organizations to set up amazing residential facilities for their child and others. While you obviously need to have some resources to do this if it’s in addition to the home you live in, some parents will donate their own home so that when they pass away, their child can continue to live there in a familiar place. This type of situation can ensure that your child continues to live in a nice family home she’s familiar with.
Once you’ve decided on a care facility, you may want to ask your friends to help support this financially. (As I mentioned in the chapter on living arrangements, most facilities desperately need more funding.) One couple who was celebrating their fiftieth wedding anniversary asked that instead of gifts, donations be made to the facility where their child with autism resided. Most care facilities have a mechanism for accepting donations, and these donations may be used to improve the quality of care and to purchase items needed for the facility.
Don’t let your child’s future scare or stress you. Start planning what you would consider an ideal life for him. Some of the same things that were important in his younger years are still important—his program and goals need to be coordinated, he needs to have ongoing intervention, he needs to have leisure activities, he needs to have a consistent approach and consistent services (speech, psychological, physical exercise, communication program, and so on), and he needs to have well-trained staff who will follow through on a regular basis. Once all that is in place for now and for the future, you’ll feel a lot better.
Tim’s Legal Tips
None of us want to think about dying, and if your stress level is high just dealing with a child with disabilities, you may be putting off writing a will. But it’s something you need to be thinking about, at any age. My friend and colleague Perry A. Zirkel, from Lehigh University, who specializes in educational law for children with disabilities, warned me that educators aren’t lawyers, and don’t always interpret the laws accurately. He referred us to Timothy E. Williams, an attorney in Tacoma, Washington, to help us understand the laws relating to estate planning. Mr. Williams has worked extensively and tirelessly helping families with disabilities and sits on a number of boards relating to individuals with disabilities. He is nationally recognized for his contributions and assistance with estate planning for parents of children with disabilities. He has generously answered our questions.
TIMOTHY E. WILLIAMS, ATTORNEY AT LAW
When should parents start thinking about a will?
Parents should be thinking about a will and general estate planning as soon they know they have a child with a disability. Many of us, especially when we are young and just starting a family, don’t want to think about dying. Regrettably, some people do die young, and when they leave children without having made plans for them, many problems are created that could easily have been avoided.
Let’s start with the distribution of your estate. Your estate is all of your “stuff” and, as they say, you can’t take it with you. It’s going to go someplace. If it is going to benefit your child with a disability, two questions come immediately to mind: Can my child manage these assets? And will the very fact that he’ll have these assets affect benefits he might otherwise have received? If you have concerns about either of these things, you should be setting up a special-needs trust (SNT).
Keep in mind that wills, probate, and guardianship law is all state law, and the laws and rules can vary widely from state to state. The information here should be accurate in all states, but you really need to see a lawyer in your own state to be sure.
How important is it for a parent to write a will and are there any alternatives?
If you don’t have a will, or if your will leaves a share of your assets outright to your child with a disability, your child will receive a share of your assets when you and your spouse die, regardless of his or her ability to manage it, and regardless of its effect on benefits. Depending on the extent of the disability, it is often possible to at least partially “fix” this lack of planning after the fact, but it is virtually always less expensive and more advantageous for your child if you do it before you die, rather than leaving it for someone else to do at what is usually a most stressful and certainly inconvenient time.
The primary vehicle for dealing with these issues is an SNT. An SNT can solve both of these concerns, and can be quite flexible as long as it satisfies some basic requirements. There are whole books written about SNTs so I won’t go into them all now. However, here are some basics:
• An SNT can go into whatever you use for your estate planning, such as a will or a revocable living trust. This will become funded upon your death.
• You can also set up a separate SNT now, rather than putting it in your estate-planning document. You would generally do this if the trust is going to be funded before your death. For example, if you anticipate that someone other than you or your spouse (such as a grandparent) is going to leave an asset to your child.
• You can select the trustee, including successor trustees.
• You can decide who will receive what is left in the trust after the child dies.
Is there a way a parent can make sure her child isn’t financially abused and that the money left to the child is used for supplemental services to make his life better?
Properly drafted, the SNT will take care of any concerns about management of the funds, protect her from financial abuse by others, and will shelter the asset from being considered an “available asset” should your child receive benefits from the state, such as Medicaid or Supplemental Security Income (SSI).
This kind of SNT is known as a third-party SNT because it uses assets that come from someplace other than the person with the disability. There is another kind of SNT we use if the person with the disability already has or is about to receive an asset and you have concerns regarding either management or eligibility for benefits. The asset might be from a personal injury award or settlement, or from an inheritance that went directly to the person with the disability, or from some other source. This is known as a first-party trust, and is sometimes referred to as a D4A trust because of the federal statute specifically authorizing such trusts, 42 USC 1396p(d)(4)(A).
This kind of SNT has less flexibility than a third-party trust, but can still be an effective way to maintain state benefits and to address management issues. This kind of trust cannot be in a will, but is set up at the time of, or in anticipation of, receiving the asset.
Rather than setting up the trust yourself, in your will or otherwise, in many states there are pooled trusts available, usually managed by nonprofits such as the ARC or another agency interested in those with disabilities. This can be either a first-or a third-party trust, and is especially helpful if the amounts to be placed in the trust are relatively small.
What money can parents leave their children that won’t supplant SSI or other sources?
A properly executed and managed SNT will have no effect on SSI, Medicaid (MediCal), or other needs-based benefits.
What about leaving property (homes, jewelry, and so on)?
Anything can be left to a trust.
What should a parent know about an adult child’s guardian?
First of all, while your child is a minor, no guardianship is necessary—you are already the legal guardian for your children. You can name the person you want as guardian for your minor children in your will in the event you and your spouse both die while your children are minors.
Guardianships for adult children are a completely different matter. In most states, you cannot designate a guardian for an adult child; a guardian is appointed by the court, usually following a court proceeding. The guardian is not automatically the parent or someone designated by the parent. (In some states a guardian is also referred to as a
conservatorship.)
Legally, your child is a fully autonomous adult when he or she turns eighteen. Of course, disabled or not, not everyone is ready to be a fully functioning adult at eighteen! As a basic protection of their rights, those rights cannot be removed without going through some formal legal process. None of us would be comfortable if it were easy to remove our individual rights as adults.
Whether your child has a guardian is always a legal decision requiring court action. It is not a medical decision, and it is not a parental decision. While you as parent will have a significant say in the process, it is the court, not you, who will make the final decision. This is understandably difficult for many parents. If you wish to be the guardian, you will most likely be appointed as the guardian. And the appointed guardian is usually designated with the authority to select a backup guardian if something should happen to her or him. But in most states, selecting a backup guardian is not done through a will, and courts will always retain jurisdiction over the guardianship.
So who gets a guardianship? Many individuals with significant disabilities live their whole lives without a guardian. Others may need the protection provided by a guardianship at eighteen, and will be harmed by delay. Still others may appropriately defer a guardianship for many years, but will ultimately need one. While it may seem counterintuitive, it is often the case that the more severely disabled are less in need of guardianship!
The question to ask is “How vulnerable to abuse is my child?” If she is never out of my care or control, has no money, and needs constant supervision, a guardian may not be necessary because there is little opportunity or motive for abuse. On the other hand, if my child goes places on her own or with friends, is easily influenced, and I have concerns about her judgment, she may be much more vulnerable, despite being much less disabled, and much more in need of a guardianship.
Growing Up on the Spectrum Page 29