Encouraging Parents to Plan for a Child’s Long-Term Support Needs

What happens to my child when I am gone?

Most of my clients who are parents of a child with autism express thoughts such as, “I want my child to live a long, full, joyful life, but I need to live at least one day longer.” They express a profound desire to be the one to manage the care of their child throughout the lifespan. However, we all know this understandable wish to live longer than a vulnerable child is not often possible. Helping parents engage in making crucial decisions and then taking helpful action to plan for their child when they are gone is a significant part of my legal practice. Medical and mental health providers are among the few natural and logical information sources to raise the following powerful planning options to help the child now and when the parents pass away.

Guardianship

Parents should consider securing guardianship of their child and name others as co-guardians to serve once the parents have passed. Once a child turns 18 years of age, the law considers them an adult and parents are no longer able to act on their behalf. For example, because parents cannot access necessary medical information under the Health Insurance Portability and Accountability Act (HIPAA), their hands are immediately tied from providing the essential medical guidance they have naturally provided for the last 18 years. In my state of Utah, a patient with cognitive impairment came for a colonoscopy with the preparation completed, but because no guardian was in place, the physician refused to perform the colonoscopy. Another woman in her twenties with intellectual disabilities entered a group home and gained over 156 pounds in 6 months, reaching 418 pounds. Because her parents did not have guardianship, the woman chose to stay in this unsafe environment and quickly ended up in the hospital with heart failure.

Although some physician offices urge the newly adult patient with autism to sign medical releases to overcome the HIPAA barriers, it is important to consider whether an individual “incapacitated” under the law truly has capacity to sign medical release documents. Such band-aid approaches may create false reassurance for parents and put the adult child at risk for other harm.

For many, legal guardianship is essential. Medical and mental health providers can encourage parents to start the guardianship process when the child is 17 years of age, so they can secure guardianship by age 18. Although state laws vary, all states have a guardianship process in which parents can go to court and secure guardianship, providing a layer of protection to prevent financial or sexual exploitation. Guardianship allows parents the ability to help make reasoned medical decisions, and provide financial, educational, and housing stability for their child. Many parents name additional guardians to carry on when the parents pass away. Siblings or other relatives of the adult child are natural co-guardians, along with the parents. However, parents are often hesitant to ask these individuals to serve as guardians because they fear guardianship will obligate these individuals to find housing and be financially responsible for the adult child. It is important to recognize that a guardian is not required to house the child, pay for their housing, or be financially responsible beyond what the adult child’s own assets cover. A guardian is also typically not legally liable for actions of the adult child.

A court guardianship process typically includes a report from the individual’s physician, providing crucial evidence for the judge in meeting the evidentiary standard to find incapacity. The report generally states whether, in the doctor’s professional opinion, the individual can provide for their own necessities, manage their health, safety, and medical decisions, and whether full or partial guardianship is appropriate. Please be willing to provide such reports.

Some worry about taking decision-making rights away from their child, but the option of partial guardianship allows more choices, and many states, even under full guardianship, preserve many rights, such as the right to vote. Supported Decision-Making Agreements are becoming legally recognized in many states and provide additional or alternative protections.

One parental blind spot is the failure to accurately gauge the abilities of their child in their decision whether to seek guardianship. Gathering input from medical professionals, teachers, therapists, and others who help their child may garner a more accurate view of the necessity and level of guardianship.

Government Benefits

Parents should also know their child might qualify for Medicaid, Supplemental Security Income, Supplemental Security Disability Insurance, state Home and Community-Based Services (HCBS) waiver, other Medicaid waivers, and housing waivers. These benefits remain after the passing of the parent and, in some cases, provide all the support the child will need. Medical and mental health providers should encourage parents to apply for all benefits as they provide monthly income, health insurance, and housing options.

I frequently meet parents who have not applied for benefits for a wide variety of reasons. They should know that even if parents feel they do not “need” the benefits currently, it is important for them to apply for benefits while they have all the relevant information at their fingertips. Whomever may serve in the parents’ absence is unlikely to have the depth and breadth of knowledge parents inherently possess to complete these application forms as thoroughly and accurately as possible. Also, the HCBS waiver programs often have long waiting lists, and if the parents have applied and then pass away, this is the event that often triggers immediate eligibility.

Providers should inform parents that in order to qualify for and maintain these benefits, the child cannot have more than $2,000 of assets in their name. Federal legislation is currently pending to increase this limit to $10,000, but for now, keeping assets under $2,000 is imperative. Some parents undermine their child’s ability to secure needed government benefits by saving money in their child’s name or failing to warn well-meaning grandparents from leaving money directly to their child and pushing the child over the $2,000 mark. If the child is working and putting the asset limit at risk, parents can look to an Achieving a Better Life Experience (ABLE) account to safely store funds, but parents must watch out for the Medicaid payback provision.

Special Needs Estate Planning

A necessary estate-planning step toward keeping a child’s assets under $2,000 includes parents establishing and funding a third-party supplemental needs trust (special needs trust [SNT]), in which the child is the beneficiary, not the owner of the funds. These assets do not count against the child in securing and keeping benefits but would help the child live a better life after the parents pass away, because even a few hundred dollars a month saved in the trust would benefit the child significantly. Further, the child’s SNT names a trustee that will help manage the funds throughout the child’s lifetime, acting somewhat in the role of the parent. Note that, if parents die without an estate plan in place, including a SNT, their child will inherit from them under state law. This will disqualify them from benefits if the inherited amount is over $2,000.

Funding the SNT

Once the SNT is set up, parents have the seemingly impossible task of planning financially for two generations. They not only need to financially plan for their own retirement, but also must fund the years of caring for their child. Parents can consider life insurance, unused retirement funds, savings, and the family residence to financially support their child after they pass away. The amount needed may not be as significant as parents fear. For instance, once the child starts receiving Supplemental Security Income (currently $943 a month or potentially more with Supplemental Security Disability Insurance), Medicaid (provides medical insurance and sometime housing costs), and HCBS waiver (if or when funded), the amount parents need to cover the cost of care for a child is substantially reduced, bringing significant peace of mind.

Having a permanent housing option established for their adult child also instills security when parents pass away. If the adult child is not on the HCBS waiver, perhaps the primary residence or a private apartment could be used for housing the child and funds from the SNT could fund some supports. Some adults with autism can be placed in an Intermediate Care Facility transition program funded by Medicaid as they wait for state HCBS waiver services when parents are no longer able to care for them. The adult child would then typically quickly qualify for the waiver and could move to an appropriate residential placement. If the adult child is on the HCBS waiver and Medicaid, they could be placed directly in a residential/group home that would be funded by Medicaid and the HCBS waiver.

Although parents generally cannot outlive their child with autism, they can, with medical and mental health providers’ nudging, establish several powerful safeguards that will protect and support their child even after they have passed.