How to plan for the future of your child with special needs | finder.com

Financial planning for special-needs families

How to plan for the future of your child with special needs

Providing for your child comes with unique financial challenges. Here’s what to consider.

Parenting a child with special needs is a rich and rewarding experience. But it isn’t without its hardships.

Parents of children with special needs typically confront financial stumbling blocks to care and peace of mind. How much can you expect to pay for services, amenities and equipment when your child is a toddler, tween or teenager? The question of potential lifetime expenses can get complicated — and fast.

Luckily, you can access many resources designed to assist you. We’ve put together a list of specialized costs to plan for when raising a child with special needs, alongside the services available to support you on your journey together.

General costs of raising a child with special needs

Average annual cost
Autism

Medical cost range: $4,110 – $6,200

Intensive behavioral intervention cost range: $40,000 – $60,000

Attention-deficit/hyperactivity disorder (ADHD) $4,110 – $6,200
Cerebral palsy$16,721 – $43,338
Down syndrome$36,384 – $47,548
Epilepsy$10,192 – $47,862
Spina bifida$14,070 – $41,460
Dyslexia$2,000 – $30,000
Visual impairments$15,788 – 55, 855
Hearing impairments$9,633 – $11,006
Cystic fibrosis$10,151$33,691

What is considered “special needs”?

In the United States, 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, and this 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 is unable 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.
  • If you or your partner have a life insurance policy in place, consider a special-needs trust as its beneficiary. When you’re no longer around to provide financial support for your child, a life insurance policy payout to your child’s trust can help safeguard their financial future.

Financial planning

Planning for the future of your child with special needs can be an overwhelming experience. But the in-person guidance of a financial expert can help clarify your options. Here are some tips for creating a healthy and balanced lifestyle for you and your child:

  • Merrill Lynch. As the wealth management division of Bank of America, Merrill Lynch offers a program designed to guide families in planning for the future of their children with special needs. It provides access to financial advisors, and you can make use of free online tools to calculate potential costs.
  • Special Needs Answers. The Special Needs Answers website offers a tool that can connect you with a local special-needs financial planner. The site also offers an informative Q&A, as well as information on pooled trusts, ABLE accounts and more.
  • Northwestern Mutual. If you’re interested in a special-needs trust for your child, Northwestern Mutual offers online advice to get you started. When you’re ready to take the next step, opt to be matched with one of its financial advisors.
  • Special Needs Planning. This website advertises a fee-free consultation to financial planning that encompasses tax strategies, guardianship, special needs trusts and budget planning.

Resources for children with special needs

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. 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.

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. It offers access to UPC 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, able to advocate 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 financially support themselves. 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.
  • Individuals with Disabilities Education Act (IDEA). This law entitles all children with special needs to a free public education that includes special education and services.

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

  • The Arc. The biggest community-based organization in the US, the Arc advocates for and supports those with special needs. It supports more than 700 local chapters around the country. Use the Arc’s chapter locator to find one near you.

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

  • Autism Speaks. Dedicated to providing solutions, across the spectrum, for the needs of individuals with autism and their families.
  • The Autism Society of America. Aims to improve the lives of those with autism and their families by providing latest news, resources, advocating for appropriate services and creating a strong community.

Healthy living

Caring for a child with special needs can be both enriching and challenging. While your child’s needs are your top priority, you must also make a habit of caring for your needs too.

Here are some tips for creating a healthy and balanced lifestyle for you and your child:

  • Use online resources. If you’re uncertain about a situation, have a question you need answered or simply want to hear ideas and suggestions from other parents, explore online resources and forums as you continue to learn about the best way to support your child.
  • Connect with the community. Local branches or chapters of national special needs advocacy groups may be near you. Connect with local parents, educators and professionals to network and broaden your support group.
  • Avoid drawing comparisons. While it may be tempting to compare your child’s progress with that of their classmates’ or others who share your child’s disability, do your best to avoid drawing comparisons. Your child’s progress is uniquely their own, and you must do all you can to support them on their journey.
  • Call on your support group. Your support group comprises family, friends and community members that surround both you and your child. To provide the greatest level of care that you can, you must care for your needs too. Ask for help when you need it to make sure that both you and your child get the rest and care you need.

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.

General costs sources:

https://www.cdc.gov/ncbddd/autism/data.html
http://www.chadd.org/Understanding-ADHD/About-ADHD/Data-and-Statistics/Cost-of-ADHD.aspx
https://www.cdc.gov/ncbddd/cp/data.html
https://https://www.ncbi.nlm.nih.gov/pubmed/18534234
https://www.ncbi.nlm.nih.gov/pubmed/18534234
https://www.ncbi.nlm.nih.gov/pubmed/17335056
http://www.decodingdyslexiaor.org/wp-content/uploads/2015/06/Family-Dyslexia-Cost-and-Support-Survey-final-draft.pdf
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3822298/
https://www.cdc.gov/ncbddd/hearingloss/data.html
https://www.ncbi.nlm.nih.gov/pubmed/23538187

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