How to prepare financially for a special needs child

Dear Chuck,

We have a young child with disabilities. Can you advise us on how to prepare financially for her care?

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Special Care Needed

Dear Special Care Needed,

For the many friends that I have who love and care for their child (or children) with special needs, there are additional financial, emotional, and, at times, spiritual burdens. Some have questioned God, and some have been able to rejoice that they were chosen to be faithful stewards of God’s very special, unique, and marvelous creations. I have been blessed to hear their testimonies that celebrate the faithfulness of God to bless their families in ways that would have never happened without the child God entrusted to their care. I am so glad you are preparing financially for their long-term needs.

Your situation is far from uncommon. I researched the prevalence of people living with disabilities in the US. The research will provide some helpful context.

Making plans

It is important to make financial plans so you can take care of the entire family while also setting reasonable goals to ensure your child gets quality care. It is equally important that you have people to call on and resources to handle the additional demands on your life.

According to the National Institutes of Health, the yearly cost of raising a child with disabilities in 2001 was $8,742. The estimate for 2025 is nearly $16,000. According to a 2020 study, a household containing an adult with a disability that limits their ability to work requires an average of 28% more income.

Raising a child with autism spectrum disorder can cost at least twice as much as raising a typically developing child. M&L Special Needs Planning reports that lifetime expenses for these children can reach $3.2 million, depending on circumstances. In some cases, government assistance is available.

Don’t allow these estimates and large numbers to overwhelm you. God is our Provider. He is faithful to meet the challenges and needs of each day.

Financial challenges

• Healthcare costs: diagnosis, inpatient and outpatient visits, equipment, therapy, medications, supplements.
• Additional expenses: caregivers, support personnel, service animal, education, transportation, vehicle modification.
• Decreased parental productivity/earnings and need for self-care.

Best practices

• Have a trusted board of people to guide you in decision-making.
• Appoint a guardian and a trustee.
• Use an attorney familiar with disability cases to:
  • Gain guardianship/power of attorney (depending on the severity of disability).

• • Set up a Special Needs Trust.
  • Create a will specifying that assets go to the Special Needs Trust so the child avoids losing federal benefits.
• Plan for the child’s future living arrangements (like a group home) or another family member.
• Use specific instructions: daily, weekly, and monthly routine; child’s likes and dislikes; medicines; important contact information; things to do and not do; people or activities to avoid — updated regularly with copies available for trusted individuals.
• Have life insurance that replaces your income and funds the child’s expected expenses unless another source of income is guaranteed.
• Use a budget, possibly a budget coach, and an emergency fund. I recommend that you plan for monthly and yearly needs for the present, but work with experienced friends or advisors who can help you anticipate realistic financial needs as your child ages.

Discover resources and financial aid

ABLE Accounts

An ABLE account is a savings and/or investment option for people with disabilities who qualify. It falls under Section 529A of the Internal Revenue Service tax code. The ABLE Act allows a person whose disability began before age 26 to save money in the ABLE account without affecting most federally funded benefits based on need. (Note that on January 1, 2026, the age of ABLE eligibility will be expanded to include people with a disability that began before age 46.) The money in the account may be used to pay for qualified disability expenses (QDEs). Any growth in the account from investments is not taxed and does not count as income if the funds are used for QDEs.

These accounts:

• Do not jeopardize access to Medicaid and Social Security.
• Limit contributions for qualifying expenses.
• Are not subject to federal income tax.
• Allow for friends and family to give to it.

Supplemental Security Income

SSI provides monthly payments to people with disabilities and older adults who have little or no income or resources. Payments are subject to multiple factors but should be a consideration.

Medicaid Waivers

If your child with a disability is uninsured, needs additional services, or needs wrap-around Medicaid coverage to help with finances and uncovered services, your child probably needs a Medicaid waiver or program. These programs waive one or more Medicaid rules in order to extend eligibility and/or services to children. For children, the most common rule to be waived is the way income is calculated, meaning the program is based on the child’s income instead of the family’s income. Since most children don’t have any income, these programs allow the vast majority of children to qualify, regardless of how much money their parents make.

Your local church

Reach out to your local church. If it does not have a program serving families like yours, consider initiating the conversation to educate and make the need known. Request help from trustworthy friends and community programs. Joni & Friends has been serving people with disabilities since 1979. They offer practical help along with the saving love of Jesus.

Be strong and persevere

Raising a special child takes humility, strength of character, and dependence on others, primarily the Lord. He entrusted you with the child and will strengthen you for the days ahead. When you don’t know what to do, run to Him, remembering the words from James 1:5:

“If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him” (ESV).

There will be days you will have to depend on Him for mercy and strength to carry on. He promises to supply your needs. Despite the challenges you may face, know that He is with you, He loves you, and He will not forsake you.

“Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us” (Romans 5:3–5 ESV).

My hope is that these few directives will provide you with direction, encouragement, and helpful resources. Thank you for your question. Blessings to you and your special family.

I’d like to invite you to join a free Crown Bible study on the YouVersion app. We have several devotionals regarding money and stewardship that will provide encouragement by bringing God’s Word into your daily life.