Special needs financial planning in 4 steps

Financial planning tips and resources to help you budget costs for a special-needs child.

Parenting a child with special needs is a rich and rewarding experience. But it isn’t without its hardships. Luckily, you can access many resources designed to assist you. We’ve put together a guide of helpful steps on how to plan for the future when raising a child with special needs, alongside a list of specialized costs and available services to support you on your journey together.

1. Understand the prenatal diagnosis

A prenatal diagnosis of a potential disability in your unborn baby can come as a shock. But keep in mind that the earlier you receive a diagnosis, the sooner you’re able to prepare.

Learn what you can from your doctor or specialist about your baby’s condition and the scope of care your little one will need. Have your partner or a close family member accompany you to lend a second set of ears and take notes.

Ask an expert: What are some of the first things I should prepare for with a special needs child?

Most new parents are not prepared for the birth of a special needs child. When a child is pronounced as disabled at birth, often the parents are ill-prepared and there is a grieving process that happens over the loss of the child that was supposed to be. Soon, parents learn to accept the perceived shortcomings of this “lessor child” and find joy in a life that at first they would have done anything to avoid.

First, in the case of pre-diagnosis during pregnancy, try to meet other young families, check with organizations that serve special populations and ask for introductions.

Secondly, check the Internet. There are a plethora of resources and lots of advice available.

Third, find the best and most sympathetic pediatrician available. Hopefully you can find someone who understands the follow through that is required, as most often a child with a developmental disability remains a child for life.

And lastly, parents should also prepare as they would for any other child — with the bonus of living a life filled with unexpected twists and turns as they hang on tight to a roller coaster ride of a lifetime.

Linda Smith, Disabilities Advocate, Author, Fundraising Consultant, Speaker and mother of a down syndrome son

2. Create a budget

Possible categories to consider when creating a budget for your child include:

  • Newborn care. Once home, you may find an extra pair of skilled hands a comfort in caring for your baby. Recruiting the help of a pediatric nurse can alleviate some of the anxiety in administering the specialized care your baby needs. And you may want to look into baby accessories that can help you keep an extra vigilant eye on your little one, such as a two-way video baby monitor or an Owlet Smart Sock, which tracks your infant’s heart rate and oxygen levels while they sleep.
  • Accessibility. If your child has a physical disability that prevents them from accessing basic necessities around your home — such as the front door, the sink, the shower, the toilet or their bed — you may want to invest in adaptive equipment and accessibility devices like a wheelchair ramp, wheelchair lift, shower chair or service animal.
  • Healthcare costs. Depending on their condition, your child will likely require routine checkups and examinations from medical specialists and may occasionally need to spend the night under supervised hospital care. Over-the-counter medications and mobility aids could also be a factor.
  • Specialized daycare. If you and your partner will both return to work, you’ll need to scout out a viable daycare service that can cater to the needs of your child.
  • Education. While the Individuals with Disabilities Education Act ensures that your child with special needs is entitled to an individual education program and resources that accompany it, this support typically ends at the age of 21. College tuition fees and the cost of accessibility aids can quickly mount.
  • Transportation. Should your child require a wheelchair or other mobility aid that prevents them from riding in a standard vehicle or school bus, you might need to look into purchasing or renting an adaptive vehicle or securing the services of a local transportation program.
  • Reduced income. Caring for a child with special needs can be a time-intensive task, and you or your partner may need to skim back on the number of hours you’re working to care for your child.

Average expected costs

About 5% of all school-age children in the US are diagnosed with a disability that includes developmental disorders, difficulty seeing or hearing and some form of cognitive impairment.

The average expected costs for five of the most common disabilities found in American children vary, given the care, education and other support necessary for quality of life.

Autism spectrum disorder (ASD) average annual cost: $4,100 – $74,200

  • Health care. Healthcare costs typically exceed that of a child without ASD by an average of $4,100 to $6,200 a year, according to the Centers for Disease Control and Prevention.
  • Individual therapists. Many ASD behavioral therapists charge from $100 to $200 an hour, with some children requiring 10 or more hours of weekly therapy. You can expect to pay anywhere from $40,000 to $60,000 for intensive behavioral intervention.
  • Communication devices. If your child has difficulty speaking, you may need to invest in a speech-generating device like DynaVox, which can cost upward of $8,000.

Attention-deficit/hyperactivity disorder (ADHD) average annual cost: $7,700

  • Health care. Children typically require prescription medication, regularly scheduled evaluations and check-ins with specialists to monitor their condition, with average annual costs coming in at $2,700 per child.
  • Education. Factoring in occupational speech, physical therapy and special education programs, the average annual costs for education average $5,000 per year.

Cerebral palsy average annual cost: $16,830 – $58,438

  • Health care. Medical expenses can include hospital stays, physical therapy and doctor’s visits, ranging from $16,721 to $43,338 a year depending on whether CP accompanies an intellectual disability.
  • Mobility device. To get around, your child might need a mobility device. Walkers range from $30 to $50, manual wheelchairs cost from $150 to $400 and powered wheelchairs typically cost around $7,100.
  • Home modifications. You might want to make your home more accessible for your child, widening hallways or installing a hand-held shower or a bathtub with a door. A wheelchair ramp can cost anywhere from $3,500 to $8,000.

Down syndrome average annual cost: $36,384 – $47,548

  • Health care. A study published by the National Center for Biotechnical Information discovered that the medical costs associated with caring for a child with Down syndrome could be around $4,287 a year. These costs include hospital visits, prescription medications and doctor’s appointments.
  • Occupational therapist. An occupational therapist can help your child develop fine motor skills, learn self-care and develop their communication. An initial evaluation can cost up to $200, while subsequent sessions range from $100 to $400 an hour.

Spina bifida average annual cost: $14,070 – $41,460

  • Health care. Medical care includes medical examinations, hospital visits, laboratory tests and prescription medications, adding up to an average of $14,070 a year.
  • At-home nurse. A postpartum nurse or infant-care specialist might be good to have around in the first few weeks after the birth of your baby. These nurses can cost between $20 and $25 an hour.
  • Mobility device. While some children with spina bifida can move with the minimal assistance of canes or crutches, others require a walker or wheelchair. Manual wheelchairs range from $150 to $400, with powered wheelchairs costing about $7,100.

3. Explore resources and assistance

Some babies with special needs need to stay in the hospital under observation for a few extra days to ensure the stability of their health before going home. Resources like Ronald McDonald House Charities can provide a place for you to stay near the hospital at little to no cost.

Your family may also qualify for government programs designed to help alleviate the financial strain of caring for a child with special needs. A few programs include:

  • Supplemental Security Income (SSI). This needs-based government-funded program helps people who have a long-term disability that prevents them from financially supporting themselves. Payments are issued monthly and are based on the federal benefit rate, which in 2018 was $750 a month for individuals.
  • Social Security Disability Insurance (SSDI). This program is available to those who have a disability but have worked for a specified number of years and earned qualifying “work credits.” Eligible SSDI applicants are younger than 65 and have paid Federal Insurance Contributions Act premiums while working.
  • Individuals with Disabilities Education Act (IDEA). Enacted in 1990, IDEA entitles all children with special needs to an individualized education program (IEP), free and appropriate public education, appropriate evaluation and procedural safeguards.
  • TRIO. This collection of student services is run and funded by the US Department of Education, designed to help students with special needs and low-income backgrounds access the support and resources they need to succeed in their postsecondary studies.
  • 4. Open a special needs trust or ABLE savings account

    Making sure that your child with special needs has every opportunity and advantage they’re eligible for is a matter of planning ahead. Setting up a trust or ABLE savings account can provide your child with a financial safeguard for the future.

    A special needs trust helps those with special needs access financial assets with the assistance of the trustee. In most cases, you can contribute or gift funds without jeopardizing federal and state government assistance benefits.

    The Achieving a Better Life Experience (ABLE) account is a tax-advantaged, state-run savings program specially designed for children and adults who have a disability. Contributions to ABLE accounts are exempt from federal income tax as long as funds are spent on qualified expenses, such as job training, specialized education and housing costs.

    While not all states offer ABLE accounts, those that do allow for out-of-state applicants. Some ABLE account contributions are also eligible for state income tax deductions.

    What is considered “special needs”?

    In the US, special needs is used to describe those with physical, cognitive, emotional or behavioral disabilities that require special care or assistance.

    People with special needs range in scope from those with autism and cerebral palsy to those with limb loss and learning disabilities.

    Timeline of a child with special needs: Tips for important milestones

    Preschool: Ages 0–4
    • In this stage, your child may be learning to lift their head, sit up, crawl or talk.
    • Sleep is a necessity for both you and baby at this time. Rest easy by ensuring that your child is safe when they sleep using a special needs bed.
    • Playing with toys is a way to bond with your little one. Toys for differently-abled kids can help you play to your child’s strengths and preferences for safe, interactive playtime.
    Primary school: Ages 5–12
    • It’s time to send your little one off to school! This transition is an exciting one, as your child will have the opportunity to develop social skills with classmates.
    • If your child has difficulty communicating at home or at school, assistive technology can help bridge the gap.
    • You and your child’s teacher can work together to develop an Individualized Education Program. An IEP follows your child throughout their school years, outlining the support your child needs as well as the goals you’d like to see them achieve. Your child’s IEP may suggest an occupational therapist to help further develop fine motor skills and communication abilities.
    Secondary school: Ages 13–18
    • Adolescence is a time of growth and development, made all the more complicated by puberty. Learning how to talk to your child about their developing body can help you both better navigate the tumultuous changes taking place.
    • Your child will long for greater autonomy and independence, which can be a challenge for many parents. One way to ease this anxiety is by having your child carry a mobile device equipped with a location app so that you can check on their whereabouts when they leave the house.
    Early adulthood: Ages 19–23
    • If your child is interested in postsecondary education, selecting an ideal program and school can be daunting. Some schools offer programs and services specially tailored to support those with special needs.
    • This could be the first time your child is living away from home. Setting up an ABLE savings account can offer the financial support your child needs while providing you with peace of mind.
    Adulthood: Ages 23+
    • Depending on your child’s interests and skills, they may be interested in pursuing full- or part-time work. Federal programs through the Department of Vocational Rehabilitation and the Job Accommodation Network offer vocational training and a job networking platform.
    • If your child cannot to fully support themselves with full- or part-time work, consider the Supplemental Security Income (SSI) program or the Social Security Disability Insurance (SSDI) program. Apply online, and, if eligible, your child could receive financial assistance and healthcare coverage.

    Your child’s rights under the Americans with Disabilities Act (ACA)

    In 1990, the Americans with Disabilities Act (ACA) was signed into law. The landmark legislation aims to advance access and opportunities for disabled persons and applies to anyone with a physical or cognitive impairment — including special needs children.

    The ADA spells out disabled persons’ rights concerning employment, transportation and telecommunications, as well as accessing government spaces programs and private facilities. It assigns a federal agency to handle each category and offers avenues to explore if you experience discrimination.

    An overview of legal rights under the ADA

    Resources for children with special needs

    We’ve compiled a list of quick resources that may come in handy as your little one grows:

    Special needs savings options

    • Special-needs trust. This type of trust helps those with special needs access financial assets with the assistance of the trustee and typically without jeopardizing government assistance. Create a special-needs trust on your own or enlist the help of a financial advisor.
    • ABLE savings account. State-run ABLE accounts provide an opportunity for those with special needs to save and budget for their future without jeopardizing potential eligibility for programs like SSI or SSDI.

    Health

    • MedicAlert. A 24-hour emergency identification service for members that alerts caregivers, family members or guardians in the event of an emergency on behalf of their loved one.
    • Birdhouse. An award-winning app that helps you track your child’s medication, test results, appointments, behavior, sleeping habits and more.
    • The National Autism Association. Offers to send eligible children with special needs its Big Red Safety Box, which contains a caregiver’s checklist, emergency plans, window alarms, a MedicAlert bracelet, safety alert window clings and more.

    Education

    • Individuals with Disabilities Education Act (IDEA). This federal law entitles children with special needs to special education through the public school system. Your child could be eligible to receive in-school support services, such as an IEP, access to a resource room or self-contained classroom and special-needs support staff.
    • American Academy of Child and Adolescent Psychiatry. Offers information for parents on in-school evaluations for children with special needs and how IEPs can help support your child’s progress at school.
    • Masters in Special Education Program Guide. If you’re interested in a private school for your child, this guide narrows down 50 of the top private schools for children with special needs in the US.
    • College Scholarships. This website can help you find a grant, bursary or scholarship for your child by organization, school or federal program.

    Compare financing options for private special education school

    Organizations

    • Federation for Children with Special Needs. Provides information and support to parents of children with special needs, including education centers, health advocacy centers and workshops for parents and family members.
    • United Cerebral Palsy. Advocates for a life without limits for those with special needs. This health nonprofit offers access to its affiliates, resource guides, employment guides, wellness tips and help with securing safe housing.
    • Special Needs Alliance. Provides access to special needs attorneys trained in special-needs trusts, guardianship, powers of attorney, qualifying for public benefits and special education.
    • National Down Syndrome Society. Works to provide those who have Down syndrome with opportunities for employment. It also offers scholarships and hosts athletic and social events.

    Transitioning into adult life

    • National Collaborative on Workforce and Disability. Offers resources for young adults with special needs making the transition into the workforce, including an overview of transition systems, a guidebook for success and a science- and technology-oriented transition program.
    • Thrive Center. A Community Parent Resource Center that offers workshops, community outreach, and online transition tips.
    • US Department of Education’s Transition Guide. A 60-page transition guide that includes education and training opportunities, available transition services and postsecondary employment options.

    Advocacy

    • National Special Education Advocacy Institute. Seeks to improve the quality of special education in the US. Its nationally recognized Board Certified Education Advocate program helps create leaders with comprehensive knowledge and advocates for special-needs programs in public schools across the country.
    • Advocating Change Together (ACT). Run by and for those with special needs, this special-needs rights organization seeks to empower and connect those with special needs to the services, resources, and communities that can best support them.
    • Parent Educational Advocacy Training Center. Works with parents, children, and schools to improve the resources available to those with special needs both in and out of the classroom. It operates as an information training center for families and professionals to learn more about supporting those with special needs.

    Government and Social Security

    • Social Security Income and Social Security Disability Insurance. These government-funded programs provide support for those with special needs who are unable to support themselves financially. Qualifying for Social Security Income (SSI) is based on your income, while Social Security Disability Insurance (SSDI) looks at your work history and previous Social Security contributions. Monthly payments are issued based on the federal benefit rate.
    • Americans with Disability Act (ADA). Signed in 1990, this civil rights law forbids discrimination against those with special needs in all areas of public life, including education, transportation and the workforce.

    Housing

    • Volunteers of America. One of the largest nonprofit housing organizations in the US offering a network of affordable housing facilities across the country.
    • National Low Income Housing Coalition. Dedicated to expanding the availability of low-income housing across the country and advocating for socially just public policy that provides low-income families with affordable housing.
    • Special Needs Answers. Offers information for guardians and caregivers on the range of potential housing options for those with special needs.

    Local Arcs

    Interactive planner for caregivers

    • Interactive Planner for Caregivers. Use an interactive planner to keep track of your child’s appointments, medications, meals and activities. Access your planner online or print it to take with you on the go.

    Autism specific resources

    Bottom line

    Acting as a parent, guardian or caregiver to a child with special needs is an opportunity for deep love and fulfillment. But it can also be financially and emotionally demanding.

    Understanding how to plan for your child’s future is the first step in creating the foundation of your shared life together. Knowing the costs that potentially await can help you budget and save for what lies ahead.

    You have many resources, services, and supportive communities that can help you and your child on your journey. Explore what’s available in your local community to extend your support group and connect with other families with children who have special needs.

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