Financial Resource Guide For Families Of Children With Autism

Raising a child on the autism spectrum holds many challenges and rewards for parents. While obstacles come in many forms, perhaps one of the most quantifiable is the financial impact.

Autism spectrum disorder (ASD) is a developmental disorder that affects one in 44 children. The severity of each case varies significantly, and children can be reliably diagnosed as early as 2 years old.

In this guide, you will find advice for saving money on medical care and day-to-day expenses, as well as an introduction to programs and funds meant to support families of children with ASD.

How does autism impact your family finances?

Raising a child with any type of special needs can have many unforeseen effects on the budget. Prescriptions, doctor visits, and therapy sessions cost enough on their own. The time spent and the cost of traveling to appointments can add to your financial stress.

Additionally, families might find they need to move to an area that is more conducive to raising a child with special needs. This could mean a neighborhood with more amenities, better schooling, and other important considerations. Along with a better neighborhood normally comes higher costs. This makes it all the more important to focus on budgeting and the fundamentals of finance.

Understanding your financial picture

Your financial picture is another way of describing your net worth, or the total of your family’s worth, including assets, debts, income, and costs. Mapping this out can help you understand how much you earn, and where the money goes. This is important information for planning your family budget and is especially useful for seeing how best to allocate funds to cover your child’s medical needs.

Calculating your net worth is a multi-faceted process. But if you use a budgeting or bill management app, it can be a far more straightforward process.

What to do when debt impacts your family finances

One of the hardest things about struggling financially is that one simple debt can eventually spiral into a huge issue. This is when families are sometimes forced to turn to one credit card to pay off another. It can be all too easy to get to the point where paying off high-interest debt seems overwhelming and unattainable. This is especially true with unexpected costs, such as medical bills and other treatments for children with special needs.

Tips and tricks for dealing with medical bills

Medical bills can add up, especially if you have a high deductible, or your child needs a procedure that insurance won’t cover. Still, there are ways you can try to reduce the impact of these charges.

• Ask for itemized bills: Medical bills can be confusing to read, and billers often present them as a single fee to simplify things for consumers. However, up to 80% of medical bills can contain errors. Asking for an itemized bill can help clarify the charges, and you could identify potential mistakes. Be sure to check for duplicate charges and incorrect procedures.
• Negotiate: Before a procedure, it may be worthwhile to try and negotiate a lower cost. Sometimes, a healthcare provider will be able to charge less if you are paying out of pocket, rather than through insurance.
• Repayment plans: If you find yourself owing more than you can comfortably pay, ask for a payment plan. This can help you keep payments manageable while helping you avoid racking up too much medical debt.

Prioritizing debts

Understanding how to properly prioritize your debts is an important skill for debt management. This includes debts incurred from assistive care for a child with ASD. If you can afford it, it is best to make more than the minimum payment. Pay off debts with higher interest rates first. However, if that isn’t an option, it is always possible to seek help. Debt relief can help you lower the amount you owe and pay it off in a shorter amount of time.

Reaching out for help and support

If you are grappling with debt, there are several options to help get your finances back on track. You can ask for support via crowdsourcing platforms as well as from family and friends. Other forms of assistance include debt cancellation, consolidation, and debt relief. Understanding these forms of assistance is key to deciding whether they will put you in a better place financially so that your focus can remain on your child’s needs. 
On a slightly different note, debt can negatively affect your mental and physical health. Eliminating it is important for your family’s well-being and stability. There are many support groups that focus solely on autism. You can find tips from people who are currently facing similar obstacles or who have already come out on the other side. At the same time, you can offer suggestions to others who are behind you in the process.

Medical debt relief

Families struggling with medical debt may be able to find relief or even forgiveness through a grant or charity (more on that below). A third-party company could even help to negotiate debt reduction or outright cancellation for those who face insurmountable medical bills. However, please note that you may still need to pay taxes on canceled debt. Furthermore, it is important to confirm that your debt cancellation agency won’t charge you unaffordable fees for their service. The last thing you need is to incur additional debt when your original goal is trying to pay off your balances.

Debt Consolidation

Debt consolidation rolls multiple debts, typically high-interest debt such as credit card bills, into a single payment. The new loan will usually charge a lower interest rate than your current average. This helps you reduce your total debt and reorganize it so you can pay it off faster. 

Consolidation can be especially effective as a short-term solution for reducing payments. If you don’t like juggling multiple bill payments, this option could make your life easier. However, depending on the new interest rate and the original interest rates of the debts being consolidated, it may end up costing you more in the long run. 

Credit Card Debt

It may seem like a good idea to use a credit card to cover health costs, but that should be an option of last resort. As always, avoiding high-interest credit card debt by paying the full balance each month is the best policy. It is important to keep your credit score healthy and you might eliminate your chances of negotiating down the debt. Debt consolidation or a personal loan would serve your needs much better.

Covering medical costs with federal aid

Parents who have children with special needs often find themselves facing many unforeseen medical costs. Fortunately, several government resources exist to help you pay for these medical procedures and services.

Federal medical coverage

To help provide financial assistance for families in need, several federal programs offer different types of funding. Eligibility varies by program, as does the application process. 

• Medicaid: This program provides health insurance to low-income families who couldn’t otherwise afford healthcare.
• Children’s Health Insurance Program: This program provides health insurance to children of families that earn too much money to be eligible for Medicaid. 
• Special Supplemental Nutrition Program for Women, Infants, and Children (WIC): This program provides funding for medically prescribed enteral and oral formulas for children up to 5 years of age. The funds are granted to states, so applications must be submitted to your state’s health and welfare agency to determine eligibility.

Flexible spending accounts and health savings accounts (FSA and HSA)

Individual health plans such as flexible spending accounts and health savings accounts provide an alternative way to pay for healthcare. Both options are untaxed, and the main difference is that HSAs are controlled by the individual while FSAs are controlled by an employer. 

Essentially, you or your employer deposits money into an account dedicated solely for medical expenses. Your employer may match the funds you put in. The flexibility of these plans makes them great options for parents of children with ASD since money can be used for a variety of things, such as therapy, appointment travel costs, and medical procedures.

An intriguing aspect of HSA plans is that they can also be used as effective retirement plans. The money deposited is not only tax deductible, but it also isn’t taxed when you withdraw it for eligible medical costs.

Paying for educational or medically necessary assistive technology and aids

Insurance is unfortunately not likely to cover necessities like sensory toys, educational videos, as well as other technology and aids. However, that doesn’t mean you need to pay full price or take on debt. There are several options families have for gaining access to these resources. 

• Borrowed and second-hand items: Rather than buying these items outright, you may be able to access them through resources such as nonprofit supply and equipment exchanges (such as Triumph Foundation), toy lending programs, and local libraries.

• State and local programs: Check your state or local community for resources that can provide access or funding to educational or medical aids.
• Fundraising: Community fundraising efforts as well as sites like GoFundMe can help you raise money to pay for medical expenses and other necessities.
• Low-interest loans: While taking on more debt isn’t always ideal, sometimes it is necessary. However, if a loan is the best option, try and make sure it has a low interest rate.

Charity assistance

Additionally, some charities can provide resources:

• Shriners Hospitals for Children: The Shriners Children’s Hospital helps provide access to medical equipment for children in need.
• Lions Club International: With many local chapters, the Lions Club aims to help communities, including helping families access medical equipment.
• Variety The Children’s Charity: This charity helps provide children with medical equipment and mobility devices.

Covering everyday financial obligations

Childcare involves more than just medical expenses, and everyday costs of living can be quite expensive. In addition to careful budgeting, families with children on the spectrum can consider some of the following programs to help make ends meet.

Federal financial assistance options for parents of special needs children

The federal government also provides financial assistance programs for families of children with special needs:

• Supplemental Security Income (SSI): For those who qualify, SSI provides monthly income to cover living expenses. Qualified individuals also get automatic access to Medicaid.
• Social Security Disability Insurance (SSDI): Similar to SSI, SSDI offers monthly income, however, recipients must have worked long enough to qualify for disability payments.
• Tax credits for families with special needs: Parents of children with autism may qualify for earned income tax credits, as well as tax deductions. Parents who apply for these credits and deductions should hold onto medical records in case of an audit.

Grants for parents who have children with special needs

Governments and organizations such as charities offer programs that provide grants to cover specific expenses.

• CARE Foundation Family Funds: This grant helps families pay for medication, therapy, diagnosis, and evaluation.
• Friends of Man: This organization provides grants for patients who need mobility equipment, prosthetics, glasses, dentures, hearing aids, and more.
• Autism Spectrum Disorder Foundation iPad for Kids Program: This fund provides children with tablets equipped with apps that help with communication and other barriers created by autism.

Housing assistance

The following programs can help provide housing assistance, including funding for rent, renovations, and repair:

• U.S. Department of Agriculture (USDA): The USDA provides money for rural residents who have disabilities and low income to help pay for rent and home renovations.
• U.S. Department of Housing and Urban Development (HUD): This department helps provide housing assistance and funds for families with low incomes seeking to rent or buy a home.
• Federal Housing Administration (FHA): A division of HUD, FHA provides insurance for mortgages provided by FHA-approved lenders, increasing access to home ownership.

Finding access to and a means of paying for housing is a big step in arranging for your child’s future. Convenience and safety are important to protect your child from stress and injuries.

Preparing for your child’s future and independence

Taking measures requires a lot of planning and consideration. Higher education, emergencies, and living arrangements are just a few of the things you will need to consider.

Higher education

After primary school, higher education can help your child have a fulfilling future.

• ABLE accounts: Also known as a 529 or 529A plan, an ABLE account is a savings account that can be paid into by the recipient as well as family and friends. Money in the account is untaxed, and you can use it to pay for a variety of disability expenses, such as food, training, and housing arrangement costs.
• Scholarships: Prospective students with autism can apply for scholarships to help pay for college costs. Many scholarship programs are designed specifically to provide higher education opportunities for students on the spectrum.

Special needs trusts

A special needs trust is a good way to manage funds for a child with special needs and ensure the money you put into the fund is safe and available when it is needed. Trusts allow a guardian to control money and decide when the beneficiary can use it. It is an effective tool for parents of children with autism to provide financial security well into their future. Trusts are legally binding agreements, so parents looking to set up a special needs trust should seek specialized legal assistance for an in-depth understanding of how it works.

Emergency fund

To stay flexible and prepare for unexpected situations, it is a good idea to start an emergency fund. Save as much as you can afford into a special fund. The goal is to have quick access to money that can cover surprise medical bills and other unanticipated costs immediately.

Additional autism resources

Here are some organizations that specialize in resources for families with children on the spectrum:

• Autism Speaks: This advocacy group spreads autism awareness and education for individuals, families, and organizations.
• Autism Society: This organization connects people to autism resources, support, community programs, and education.
• Operation Autism: This group provides resources and support for military families with children with ASD.
• Autism Science Foundation: This foundation provides funding for research and scientific studies to further the understanding of autism.

Children on the spectrum have a lot to contribute to their families and society. With the right help and support, you can ensure they reach their potential and live a fulfilling life.