- Legal and Financial Planning for Parents of Children With Special Needs
- Transitioning to Adulthood
- Guardianship, Conservatorship, and Power of Attorney
- Government Benefits and Income
- Healthcare and Medical Expenses
- Life Insurance Policies
- Estate and Tax Planning
- Organizations and Resources for People with Disabilities
According to the CDC, one in four Americans has a disability that causes disruptions in their everyday life. The CDC also reported that the percentage of individuals with disabilities increased as income decreased. Living below the poverty line doesn’t just increase your chance of becoming disabled, but can also make living with a disability much harder, as access to healthcare and assistance services and tools can be limited. This is why, if you are the parent or guardian of an individual with disabilities, it is important to have a legal and financial plan in place.
Whether your child or dependent was born with their disability or developed it later in life, it behooves you as a guardian to put a financial and legal care plan together as soon as you can. Making these plans may feel morbid, however, instead of considering these plans as a preparation for the worst, think instead about how you are safeguarding a bright and successful future for your child. This includes considering any of their own financial and legal needs as well as their mental and physical needs, including life expectancy and prolonged quality of life expectations based on their condition.
These plans should cover transitioning into adulthood, educational opportunities, guardianship or power of attorney, continuing health and medical needs, life insurance, and government aid. Below, you can find resources for how to plan for these considerations, and others both financially and legally.
Helping a child with a disability transition into adulthood can be difficult. While not much may change in daily life when a child turns 18, there are myriad shifts in the legal and financial realm to be aware of. Because of this, it’s best to start making transitional plans before your child becomes a legal adult, to prepare yourself and your child for what this legal milestone means for their situation. It’s still possible to institute a plan after they turn 18, should they develop a disability after they are already considered a legal adult, but may involve more complications.
While making these plans, you need to consider not only the reality of your child’s ability to care for themselves, but your own financial situation, including financial relief and special needs financial planning resources available to you. The financial relief or assistance programs available to the parent or guardian of a minor with disabilities versus an adult with disabilities can vary, so make sure to investigate this as you’re making your plans.
Depending on your child’s condition, when they become a legal adult, you will want to discuss when or if they’re ready to live on their own.
There have been a lot of changes to the housing opportunities available to adults with disabilities, one of those changes being the Fair Housing Act. The Fair Housing Act protects against housing discrimination and states that all multifamily dwellings must be built with certain accessibility features.
Short-term dwellings, such as rentals, must also adhere to these accommodations, and allow individuals to make or request access-related changes — such as installing a shower bar or entry-ramp — to their personal dwelling or common areas This opens up many previously unavailable spaces to the portion of the population with disabilities. There has also been an increase in housing options specifically for special needs individuals, such as group homes, assisted living facilities, and section 8 housing.
Another part of the transition to adulthood is entering the workforce. Usa.gov offers a list of jobs and educational opportunities for people with disabilities on their website, which can be a great starting point for those wishing to enter, or re-enter, the workforce.
The career possibilities for workers with disabilities have also expanded in the last few years, especially as remote work becomes more common. Despite the positive strides that have been made for workers with disabilities, such as the Americans with Disabilities Act (ADA) of 1990, workers with disabilities can still face discrimination and harassment in the workplace.
Many workers with disabilities require specific accommodations, such as excess time off, different or more flexible scheduling, or special equipment. And while the ADA prohibits employers from denying workers necessary accommodations, they can be viewed by able-bodied co-workers negatively, or in some cases incur retaliation from managers, which can create a hostile working environment.
It is important to have an in-depth conversation with your child or dependent well before they enter, or re-enter, the workforce about the potential difficulties they may face due to their condition, and what protections are available to them. The U.S. Department of Labor offers resources for workers with disabilities, including employee rights and employer responsibilities, on their website.
Higher education is another avenue many pursue as they transition to adulthood. While the Bureau of Labor Statistics reports that people with disabilities are less likely to complete a bachelor’s degree, this does not mean that college or higher education is off the table. 19% of undergraduates reported having some kind of disability in 2015-16, which proves that there are adults with disabilities making college work for them. Choosing the right college or program for your child or dependent can help set them up for success. Perhaps this means attending a college close to home or online, or pursuing a program that allows for a lot of stationary time, or flexible scheduling.
Transportation is an important factor of life for all, as having reliable transportation means freedom in our everyday lives. You may be asking; can you drive with a disability? The answer in some cases is yes. Many individuals with disabilities can safely and successfully drive on their own. If this is, or can be, the case for your child, you will want to look into the driving resources available for people with disabilities, such as finding an adapted vehicle or obtaining a handicapped parking permit.
For people who cannot, do not, or choose not to drive, there are still ways to keep the freedom that reliable transportation provides. Many states have transportation resources for individuals with disabilities, such as free public transportation vouchers or shuttle services. Rideshare services, such as Uber and Lyft, are also instituting accessible measures to accommodate passengers with disabilities.
For individuals who can’t, or don’t wish to work or pursue higher education, day programs and disability services may be a good replacement option. These programs can provide structure, socialization, and a sense of purpose or achievement. There are numerous programs out there, for both youth and adults with disabilities. These programs are also often run by nonprofits, which typically means they are little or no cost to join.
The possession of guardianship and other forms of legal authority is incredibly important to define and notarize as the caretaker or parent of a person with disabilities, both before and after transitioning into adulthood. There are several types of guardianship a person can possess:
- Plenary or Full Guardianship: The plenary guardian of an individual is recognized by the courts as having full power to exercise all legal rights and duties on behalf of a dependent. While this type of guardianship is usually extended over minors, adults who are considered incapable of caring for themselves or making their own responsible and coherent decisions can have a plenary guardian.
- Limited Guardianship: Limited guardianship for minors looks different depending on the settlement of custody by the parents and the court. Limited guardianship for adults is generally extended to individuals who can make responsible and coherent decisions in some areas of their lives, but not others. The powers of a limited guardian for adults, in this case, is also decided by the state court.
- Guardian Advocacy: Guardian advocacy, or a guardian advocate, allows a caretaker, parent, or family member the same rights as a “natural guardian” — which is the type of guardianship all parents have over the children under the age of 18 — without having to hire a lawyer. This type of guardianship is designed and granted specifically to those taking care of persons with developmental disabilities, such as autism, cerebral palsy, spina bifida, or Down’s Syndrome.
Parents or caretakers of children with disabilities will have to consider and pursue guardianship before their child turns 18 if they want to continue to have the authority of decision and consent once their child is a legal adult.
If you are the caretaker of a legal adult with disabilities, but not a parent or family member, you will need to look into your state’s legal adult adoption options and meet any and all requirements. If you don’t feel you require full guardianship over your child or dependent as they transition into adulthood, you can also look into conservatorship or power of attorney.
Having conservatorship allows you to make estate planning and financial decisions on behalf of your conservatee, a term applied in this case to adults, if they are incapacitated or unable to make their own decisions on the subject. Seniors or those with terminal or recurring illnesses will often appoint certain loved ones with conservatorship.
Power of attorney is a document authorizing one individual (the agent) to make decisions on behalf of another individual (the principal). Depending on the specifications of the document, the agent will have broad or limited control over the principal’s finances, property, or medical treatment. Power of attorney is also used in the case that the principal is incapacitated, either due to illness or impairment.
To receive SSI for children, the child must be either:
- Blind or otherwise disabled;
- Under 18;
- Under 22 if they are regularly attending a higher education program, as determined by social security.
There is no minimum age for children to receive SSI, and parents can apply on behalf of their children. To receive SSI as an adult, you must be:
- Between the ages of 18 and 65;
- Meet the federal definition of disability;
- Be a U.S. Citizen;
- Have limited income resources.
As an adult, you can apply online for SSI if you meet these qualifications and you have never been married. Individuals over 65 without a disability can also apply for SSI if they meet the income restrictions. SSI is available for those who have either short-term or long-term disabilities, as long as the disability is projected to displace your earning power over the next year.
SSDI is offered to adults with disabilities who have not yet reached the age of retirement, but have previously paid Social Security (FICA) taxes and can no longer work in the same capacity. You need to have worked a certain length of time as well as have a qualifying disability to receive this payout benefit. If you are currently working, your current earnings will also be taken into account.
These benefits can be incredibly helpful for both the caretakers of people with disabilities and the person themselves. If your child or dependent is seeking financial independence, be sure to explain how these programs work, including how to renew or maintain their status, and how they can be, or have been used if you already receive benefits on their behalf.
It’s critical to ensure that both adults and children with disabilities have access to healthcare and the ability to cover their medical expenses. This can be a daunting task, especially when facing mountains of medical debt, or the barriers and disparities people with disabilities face in healthcare. These disparities can arise due to environmental factors — such as an inability to reliably get to a doctor’s or specialist’s office — medical malpractice or misdiagnosis — which can be common among “invisible” disabilities — or socioeconomic factors of the person with disabilities or caretaker. However, there are resources, such as the income supplement programs listed above, that help pay for medical expenses. New advantages are being pioneered to make healthcare more accessible as well — telemedicine has grown much more popular in recent history as an accessible alternative to the physical doctor or therapist’s office.
Two of the healthcare options available to people with disabilities are Medicare and Medicaid. If you receive SSI, you will receive Medicaid, and if you receive Social Security Disability Insurance, you will receive Medicare automatically. You can still apply for Medicaid if you do not receive federal income stimulus. However, you or the person for which you are applying will need to meet the eligibility requirements for both programs. These programs may require proof of income, disability, age, and citizenship.
A health savings account, or HSA, is another option for covering healthcare costs. HSA’s are usually offered through your employer, and generally pull a much smaller premium from your paycheck than traditional health insurance coverage.
HSAs work by putting away your monthly pre-tax premium into a savings account that is qualified for health expenses, such as co-pays, deductibles, and other healthcare related costs. Because these funds are untaxed, you may be able to get reimbursed for equipment or doctor’s visits related to the maintenance of a pre-existing condition, such as a disability.
It is good to note that HSAs do not offer set copays or deductibles on their own, and not all expenses will be eligible for reimbursement. Therefore, the people HSAs make the most sense for are those who make infrequent or smaller purchases related to healthcare.
Long-term care insurance is designed for those who need consistent, long-term assistance. Long-term care insurance provides you a reimbursement stipend to cover costs of services or caretakers that assist with daily living tasks such as eating, bathing, dressing, or mobility.
What can be slightly tricky about long-term care insurance is that you will not qualify for it if you have a pre-existing condition. Long-term care insurance is a popular choice for people near retirement age, as well as people who have a high risk of debilitating disease, or work in a high-risk environment that could cause injury or impairment.
As the parent or caretaker of a special needs individual, looking into long-term care insurance for yourself if you are at risk of needing care can help protect your savings, as you can receive reimbursements for care for years.
Some individuals with disabilities require the attention of frequent or even daily caregivers. Caregivers can help facilitate daily activities such as bathing, cooking, cleaning, and in some cases helping with the administration of medication or the management of medical equipment. This service can be provided through private at-home visits or through a nursing home or special needs living community.
If you decide to hire a professional caregiver, it’s important to know the rights and responsibilities an employed caregiver has, as well as the types of services they are qualified to provide. The same goes for looking into a nursing home or care facility. Individuals with special needs are often vulnerable, and can’t always communicate if they are being treated poorly in their nursing home. Proper research and observation of service when possible prior to changing caregivers can help you decide on the right move for your loved one’s continual care.
When planning for the future of your child or dependent, parents and caretakers can help assure their child’s financial future by taking out a life insurance policy. In the unfortunate event that you pass away while caring for your dependent, a life insurance payout can ensure that the loss of their caretaker does not also mean the loss of their healthcare, food source, or shelter.
When looking at life insurance, you will want to carefully select the right policy for you, to make sure that your child, or child’s guardian or conservator, is appropriately provided for. It’s important to note that any insurance payout can impede or affect federal income assistance, so it’s prudent to speak with a lawyer or financial planner when instituting life insurance into your legal and financial plan.
Special needs trusts (SNTs) are accounts designed to supplement and support government benefits that a person with a disability is eligible to receive. There are two different types of special needs trusts: first-party and third-party. A first-party special needs trust is managed by the special needs beneficiary themselves, while a third-party special needs trust is owned and contributed to on behalf of a special needs beneficiary.
A first-party special needs trust is often established when a special needs individual inherits property of funds, or receives a court settlement. A first-party SNT can also be established when a person develops a disability and needs to store their assets in an account that won’t largely hinder their ability to receive other federal income assistance.
A third-party special needs trust can be established as part of a will, where the beneficiary will receive a payout upon the death of the proprietor. A third-party SNT can also be established as a stand-alone trust — with the added benefit of being able to receive donations from people not listed on the trust account. You can set up a special needs trust through a financial or legal planner.
As we mentioned earlier, as the parent or guardian of someone with disabilities you should finalize your estate plan sooner rather than later. In the unfortunate event that something should happen to you, having a finalized will and letter of intent allows you to establish or maintain a level of care for your child, and delegate funds as needed.
A letter of intent is a document used to make a person’s, or group of people’s, specific needs or wants in regards to a given situation clear. A letter of intent for a special needs child can establish the care needs of your child should they be transitioning caretakers. Including a letter of intent in your estate planning as a special needs parent can give you the peace of mind that your child or dependent will continue to receive the care they need, even if you can’t provide it.
ABLE stands for Achieving a Better Life Experience. ABLE accounts allow people with disabilities to establish a tax-free savings account that will not affect their ability to receive federal income stimulus. These can be great accounts for children with disabilities as they transition into adulthood, but there are a few conditions:
- Individuals must have developed their disability before the age of 26 to be eligible for an ABLE account;
- Contributions to ABLE accounts are limited at $1,500 a year;
- ABLE accounts cap at $100,000 before they affect federal income stimulus eligibility.
There are a few exceptions for people with disabilities who are currently working, or who are the beneficiary of a special needs trust.
As the final, and potentially most important part of your estate planning, you should establish your will. The will is generally divided into two separate parts — your living will, which dictates decisions about life support should you be unable to make our own decisions, and your last will and testament, which will divide up your assets, include any letters of intent, and can also be used to release trust funds. It is important when you have made your living will and last will to appoint a will executor — this person will be in charge of carrying out the instructions of both your wills. Creating a will as a parent of a child with special needs may include more planning or coordination of assets, depending on your legal relationship and responsibilities regarding your child or loved one.
Here are 10 different organizations and resources available to the families and guardians or individuals with disabilities that can help foster better care and quality of life:
- United States Access Board: provides assistance and advocacy for issues of building and transportation accessibility.
- The Arc Center For Future Planning: provides advocacy and assistance for individuals living with developmental disabilities.
- Kids As Self Advocates: provides training and information to children with special needs about their rights and resources to encourage them to make informed decisions about their wellbeing.
- American Association of People With Disabilities: provides advocacy and involvement opportunities in the service of increasing the political and economic power of people with disabilities.
- Job Accommodation Network: helping connect people with suitable job opportunities.
- Americans with Disabilities Act: the ADA website provides information and technical assistance about the Americans with Disabilities Act.
- Office of Special Education and Rehabilitative Services: provides information and funding for people with disabilities who are looking to pursue higher education.
- Advancing States: offers job listings, grant opportunities, and event listings for aging people with disabilities, as well as advocating on a state level for improved accessibility initiatives.
- National Disability Institute: offers career and financial tools and training for adults living with disabilities.
- Easterseals: offers care services, employment training, and local program directories for people with disabilities and their support systems.