Turning 18 is a major event from both a social and legal perspective. Most teenagers and their families look forward to 18th birthdays because they represent a new stage of maturity and new opportunities. But for the parents or guardians of young people with disabilities, this milestone can also be a source of stress and uncertainty. Under state and federal laws, all new adults, regardless of disability, automatically gain specific legal rights, responsibilities, and authority for personal decision-making. Various benefits that individuals with disabilities need in order to thrive may also have different eligibility rules once the beneficiary turns 18. When any of these factors are not accounted for, people with disabilities who have just become adults and their families can face many kinds of difficulties. Unless their rights and finances are protected with legal documentation, some individuals with disabilities may struggle to find employment, lose out on government programs they are entitled to, or even become vulnerable to financial losses or exploitation.
If you have a child who has one or more disabilities and who will be turning 18 soon, one of the best things you can do for them is to seek specialized legal advice. SGW Law is one of the top disability law firms in New Jersey, and we also specialize in estate planning and education law, which gives us the experience to help your family plan for all possibilities into the future. Get in touch with our team online now or read further below on how best to prepare for a child with disabilities turning 18 in NJ.
What Changes When a Child with a Disability Turns 18 in New Jersey?
Many legal responsibilities and rights held by a child’s parents or guardians instantly transfer when that child turns 18. This is true for a wide range of federal laws as well as New Jersey state laws. Even though there is a clear, exact date for this changeover – an 18th birthday – many families of children with disabilities feel unprepared. This is not because they are caught by surprise, but because they do not know how to prepare. While legal advice from an experienced attorney specializing in disability law can help you understand your child’s unique situation, there are many common issues that families across New Jersey must face.
Legal Rights and Decision-Making at Age 18
Before learning the possible options under law and deciding on a plan, it’s important for parents to realize what happens when a child with a disability turns 18. All legal adults, even those with significant psychological, developmental, or cognitive impairments, have the right to make their own decisions in many areas of life, unless legal action has been taken saying otherwise. At age 18, all New Jerseyans are assumed to be legally competent and can open a bank account and apply for a credit card, a loan, or insurance. They are also the sole decision-maker about their own education and medical care: Legal adults are not inherently required to attend school or to accept medical treatment, even if their lives are in danger.
Impact on Education, Healthcare, and Records Access
Today, Americans’ privacy in matters of their education and health is robustly protected by two well-known federal laws. The Family Educational Rights and Privacy Act (FERPA) allows parents and guardians to access their children’s school records while those children are minors, but requires consent in the case of adult students. The Health Insurance Portability and Accountability Act (HIPAA), meanwhile, pertains to medical records. While this act has many important provisions and imposes stiff penalties for healthcare providers improperly using information, it has similar clauses to FERPA regarding parents viewing children’s health records. In other words, while minor children’s medical information is viewable by their parents, healthcare providers will almost never give out an adult’s records without their consent. This is such a stringent requirement that after natural disasters or other mass emergencies, hospitals will usually not disclose the identities of injured people to their own relatives over the phone.
Learn more about What Qualifies a Child for Special Education in NJ.
The relevant effect of these laws is that parents can immediately lose access to important records upon their child’s 18th birthday without proper legal authority. Preventing this outcome means getting the correct documentation in order well before that significant birthday.
Understanding Guardianship and Alternatives in New Jersey
One possible recourse that families with a child with disabilities may turn to in New Jersey is setting up a guardianship. Under this type of arrangement, the rights and other statuses associated with a legal adult are fully transferred from the person under guardianship to their guardian. While for some families, this is a way to protect their child in all the possible ways in one fell swoop, it is also a radical move that can be difficult and time-consuming. People with disabilities are as individual in their personalities and needs as anyone else, and there are many other options – what is most important is carefully planning the course of action that is best for your child.
Want to learn about setting up a guardianship? Read Planning for the Future for Your Child with a Disability.
When Guardianship May Be Necessary
Guardianship is typically only granted by New Jersey courts for people deemed “gravely disabled”, meaning that they have no way of meeting even their basic needs on their own. An adult with significantly diminished functional capacity in many areas or whose safety is in immediate danger could be placed into a guardianship, and this does not just include young people with disabilities who have just turned 18. Older adults with advanced forms of dementia are one other example. A guardianship is a long-term commitment that comes with potential difficulties. It may require a lengthy court process, and in some forms, guardianships have even been criticized by advocacy groups for people with disabilities. Nevertheless, if other options are not feasible, guardianship can be a last resort to keep someone safe.
Alternatives to Guardianship
If your child’s disability causes difficulties for them in some aspects of life, but they are self-sufficient in other areas, a less extreme option than guardianship may be best. For example, supported decision-making allows individuals to exercise their adult legal rights with the help of trusted people who have been designated for this purpose. For example, someone with this type of legal plan can lease an apartment and apply to trade school with the assistance of their supporters. New Jersey is not one of the states that has specific laws governing supported decision-making, but it is a possibility because state law provides for alternatives to guardianship in NJ whenever possible.
Other legal documents allow individuals with disabilities to designate someone to make specific kinds of decisions on their behalf. For example, a healthcare proxy designation can allow a parent to see health records and speak to care providers for their child who is over 18, which is helpful if that child has a severe anxiety disorder related to medical matters. Various kinds of power of attorney documents can also flexibly be used to transfer authority over financial affairs or other specific responsibilities. Your attorney will best be able to advise you on the specialized documents that can help you keep your child secure as they take care of other aspects of their own life.
Disability Estate Planning for Long-Term Security
Planning for a child with disabilities who is turning 18 is not just “before” and “after”, nor does it involve one-and-done court filings. That is to say, beyond thinking about the single milestone of adulthood, the further future should also be on your mind. In estate planning terms, the best thing you can do for an heir who has disabilities is to protect their finances and quality of life while preserving any benefits they regularly use.
Why Estate Planning for a Child with Disabilities is Different
In the traditional method of estate planning, all of a person’s intended heirs are left cash sums, the contents of bank or trust accounts, or valuable physical property. But the unfortunate reality is that for some people with disabilities, the windfall of an inheritance can be more harm than good. Various federal and state benefits for individuals with disabilities, including Medicaid, are tied to income and asset levels. If someone uses these programs and the quantity of money they make per month, or the amount they have saved, rises above a certain threshold, they may stop being eligible. In the long run, this can effectively cost more money than the estate beneficiary actually received.
Parents of children with disabilities obviously do not want to unintentionally jeopardize their child’s benefit status. There are ways to fully include all intended heirs in an estate while also retaining necessary government benefits, but the strategies needed may not be obvious. Therefore, estate planning for a disabled child in New Jersey requires the help of an attorney with specialized legal knowledge and experience dealing with all relevant federal and NJ state laws.
Learn more about the Duties and Responsibilities of a New Jersey Executor.
Special Needs Trusts and Benefits Protection
One of the best-known ways to give a child with disabilities their fair share of an estate, while keeping them financially secure in the long run, is through a special needs trust. However, the details of this trust type are not well understood by most people without legal training. A special needs trust can be highly useful because the trustee can spend assets on many categories of things the beneficiary may want or need in daily life without this counting as income. Furthermore, nonprofit organizations are often chosen as the trustee of a special needs trust, meaning the day-to-day management is handled by trained professionals who care deeply about the welfare of those with disabilities.
Learn more about Trust Basics for Trustees and Beneficiaries.
Another way for people who use disability-related government benefits to save for the future is with an ABLE account. Also called 529A accounts after their position in the Internal Revenue Code, ABLE accounts are designed to help individuals stay under asset limits for federal benefits like SSI and state-based programs such as Medicaid. These accounts are currently available for people who become disabled before age 46, and money from the well-known 529 educational savings plan program can be rolled over into an ABLE account. Your attorney and your financial advisor can both give you further details about whether opening an ABLE account could be right for your child.
Coordinating Legal, Educational, and Financial Planning
Parents of children with disabilities know that their lives are as complex as anyone else’s. Just like people without a disability must make decisions in their monetary, family, and educational or employment spheres that affect their overall situation, individuals with disabilities often need legal planning, special education advocacy, and financial strategies that complement one another. And updating all of these plans as a child nears adulthood is the best way to ensure that their 18th birthday brings more joy than stress.
Transition Planning and Special Education Advocacy
Under New Jersey’s education statutes, older students (aged 14 and up) who have an IEP must have a post-high school transition plan based on their needs, interests, and strengths, and with as much consultation with the student as is appropriate. You may have talked with your child about what their goals are for continuing their education or job training, and they may need your help saving for tuition in a tax-advantaged way. And while some NJ education laws only apply to individuals with disabilities in grades K-12, adults with disabilities in postsecondary or career education also have specific protections of their rights under state law. Since these goals and choices are highly individualized and depend on personal preference and capabilities, an attorney or disability advocate is best positioned to help.
Need to Prepare for Your Next IEP Meeting? Read more with Your IEP Meeting: What to Expect.
Working with a Legal Team That Understands the Whole Picture
The many complications faced by families when a child with a disability nears adulthood can only be dealt with using the right kind of assistance. The law firm you choose should have specialized experience that broadens, rather than narrows, its approach. At SGW Law, our experience allows us to synthesize solutions for many possible issues and roadmaps toward your family’s goals into a comprehensive legal plan. The renowned New Jersey disability and education lawyers who comprise our team put their skill in estate planning, special education matters, and precedent-setting litigation to work so that all individual details are covered without losing sight of the true goal of securing your family’s quality of life and peace of mind.
Planning Ahead with SGW Law Firm
As necessary and helpful as it is to proactively plan for a child with disabilities to turn 18, this process can seem overwhelming and has no single clear start point. Fortunately, families in New Jersey do not have to undertake this effort alone. SGW Law Firm is a name that is long trusted in the fields of disability law, special education law, and general family law. All of the highly skilled attorneys on our team share the mission of helping you protect your child’s rights, benefits, and future. No matter your family’s needs or concerns surrounding a transition to adulthood for a child with disabilities, we’re dedicated to helping you find the best road forward – contact SGW Law today to consult us on taking the first step on that path.
Planning for Children with Disabilities at 18 (FAQ)
Can Parents Still Attend IEP Meetings After Their Child Turns 18?
Yes, parents may attend IEP meetings, but the student must provide consent once they are a legal adult.
Does Turning 18 Affect SSI or Medicaid Eligibility in New Jersey?
Yes, eligibility for SSI and Medicaid is re-evaluated at age 18 based on the individual’s income and assets rather than the parents’.
What Legal Documents Should Families Consider Instead of Guardianship?
Families may consider power of attorney, healthcare proxies, or supported decision-making agreements as less restrictive alternatives.
Can Siblings or Other Family Members Be Named in a Special Needs Plan?
Yes, estate plans can name siblings or other trusted individuals as trustees, guardians, or successor decision-makers.
What Happens if No Legal Planning is Done Before Age 18?
Without planning, parents may lose the ability to make medical, educational, or financial decisions on behalf of their adult child.
Further Reading: