Planning for the Care of Your Adult Child on the Spectrum

April 1, 2023

Today marks the start of National Autism Awareness Month. For parents who have children with autism spectrum disorder (or ASD), it is imperative that they begin to plan for their future now. The CDC recently reported that approximately 1 in 36 children in the U.S. is diagnosed with ASD. Though it’s not something anyone wants to think about, every family should prepare for the day they are no longer around to care for their loved ones, especially those with disabilities. The most important part of designing a care plan is to utilize the help of professionals who specialize in the care of special needs. Since the process can be overwhelming,

“It’s essential to work with specialists in this type of planning,” said AndrewKomarow, founder of Planning Across the Spectrum in Connecticut. When working with a specialist, parents should let them know what they want for the child, so that a specialist can tell them what is right for their situation.

Financial Planning

For many, the most intimidating portion of planning for the care of a special needs child is likely the financial aspect. People with disabilities usually qualify for Government services, such as Social Security Income (SSI), Social Security Disability Insurance (SSDI) and Medicaid, but sometimes that may not be enough. Many government services have income limitations, so it’s very important to set up supplemental income, such as personal funds and life insurance, properly in order to avoid the disqualification of government aid. A special needs, or supplemental needs, trust will hold the assets of a person with disabilities without costing them their government benefits; another financial option is an ABLE account, that allows savings up to $100,000 without losing government benefits.

To find a planning specialist that is trained in the care of those with special needs, parents may check the websites of the National Elder Law Foundation and Academy of Special Needs Planners.

Housing

When it comes to housing, “It’s more important to look at the individual,” Komarow said. “What interests and supports do they need?” Parents should think beyond their child living in the family home or with other family members. It’s important to consider how independently functioning they are and which communities will best serve their needs. In other words, instead of parents thinking about where they would like to retire, they should be looking at areas that their child can thrive in after they pass away.

There is a trend toward more community-based living, Gordon Homes with WestPoint Financial in Indianapolis points out. “State-administered Medicaid HCBS waiver programs allow people with disabilities to live in a house or apartment,” he said. A planning specialist will know about options such as these and be able to direct parents toward a solution they can be comfortable with, and their children, if able to, should always be brought into this conversation.

Designating a Care Team

How independently functioning a child with ASD is will determine what kind of care team needs to be put in place. A trustee will help to manage the trust on behalf of the child. They should be someone who is responsible, cares about the child, and will outlive the parents. A guardian or conservator would make all of the decisions regarding an individual’s financial and personal affairs. With a power of attorney, both they and the individual will be able to make decisions together. If able, the child should always be included in the decision-making process, because they should feel just as comfortable as their parents are with the designated care team.

Compiling Information for Caregivers

Marianne Ehlert of Protected Tomorrows, who works with families of people on the autism spectrum to plan for adult living, knows that, “Usually, parents or guardians of a teen understand what that child needs.” It will be important to determine whether or not a child will have the skills they need as a young adult to function independently, such as managing finances, scheduling care appointments, managing personal hygiene, and maintaining the shopping, cooking, and cleaning at home. This will also help determine what sort of living conditions they will need. Will they live with family, alone with minimal support, or will they need to live at a full-time care facility? A statement or letter of wishes, though not a legally-binding document, will serve as a guide for those who will care for your child. It should include all of the child’s care instructions, including medical needs, financial benefits, residential arrangements, and even daily routines.

Planning While Your Child is Still Young

When planning happens early, parents can learn about beneficial programs that their child may be eligible for, oftentimes at their own school. A child’s education can actually be designed to support their plans for the future. Special Needs Planning expert Phillip Clark points out that many planning processes focus on the care of the child once the parents are gone, but planning should be focussed on the child thriving both in the future and now. In order to succeed in the future, children need support now that will help them achieve all of their goals. Families should envision what they want for their child and then determine what needs to be done in order to make that happen.

Not only can planning provide caregivers with priceless peace of mind, but it can also lead to the discovery of resources that will help children with ASD flourish now. Since the planning process can be long, Insureyouknow.org can help parents stay organized by storing all of their documents in one place, such as financial information, medical records, and detailed care instructions.

Turning 18: Planning Ahead

January 30, 2023

Turning 18 is a momentous occasion, accompanied by many new freedoms and opportunities along with increased responsibilities and most notably, the official recognition of an individual as a legal adult in the eyes of the law.

While your child will enjoy the many exciting perks that accompany their newfound adulthood such as staying out without a curfew and gaining the right to vote and make their voice heard they’ll also reap the more exciting benefits like accessing financial accounts in their name that they previously may not have had access to and entering legally-binding contracts. Hence, there is much accountability to be taken and responsibility to operate with as one navigates through these new freedoms.

Sign a Medical Power of Attorney

You will find that upon waking up the night after your child turns 18, that they are no longer under your guardianship on healthcare portals where you could initiate care and treatment on their behalf. Arguably one of the most important measures a parent can take upon the commencement of their child’s adulthood to guarantee their ongoing support and involvement in their lives is a Medical Power of Attorney (MPOA). It grants a select individual the ability to make healthcare decisions on one’s behalf in the event that they’re unable to as a result of injury or illness. Without completing this task ahead of time, parents face the risk of time-consuming guardianship battles in court that could hinder them from making medical decisions for their child (such as in the event of a car accident or incapacitating illness) in a timely manner, leaving the ultimate outcome in the hands of the court.

Durable Power of Attorney

While your child may enjoy the many highly-anticipated freedoms that come with adulthood, they are likely still financially dependent on you as their parents. This includes coverage under a parent’s auto and health insurance. Creating a Durable Power of Attorney (DPOA) allows parents to assist in the management of their child’s finances and enables parents the ability to access bank accounts, sign tax returns, and complete other transactions as well as the ability to act on behalf of the child if they are a different part of the world, are incapacitated, or are otherwise unable to.

HIPAA Waiver

Under the Health Insurance Portability and Accountability Act (HIPAA), an individual’s personal health information is protected. Once a child turns 18, healthcare providers can no longer legally disclose information regarding their patient records or treatment plans to their parents, even if they happen to be on their insurance plan. This can prove an impediment for parents seeking to know the status of their child’s health or make necessary medical decisions for them. Having the necessary medical records and information regarding your child’s health is especially essential in the case a parent needs to exercise their Medical Power of Attorney. A signed HIPAA release form by your child grants parents and guardians the ability to access their medical records and speak with their healthcare providers.

FERPA Waiver

The Family Educational Rights and Privacy Act (FERPA), in a manner similar to HIPAA, protects the privacy of educational records including report cards, test scores, and disciplinary records. When a child turns 18, their educational record becomes their own and cannot be released to their parents without their consent, despite the fact that their parents may be funding their tuition. A FERPA waiver permits parents of adult children to maintain access to these records and continue to be able to request amendments to them as needed.

Insureyouknow.org

Though your child may always remain your child in your eyes, the reality is at 18 they will earn the status of a legal adult, coinciding with the expansion of many of their freedoms, while simultaneously, many will be relinquished from you as the parent. Despite this abrupt shift, it is likely your child will still be largely dependent on you, as such, there are important steps you will want to take to ensure you can best support your child. Planning ahead by filling out the necessary documentation can provide a great sense of relief and guarantee that you can continue to support them. Keep a record of the documents you fill out at insureyouknow.org to easily keep track of them and access them.