Financial Assistance for Parents of Special Needs Children

Parents of children with developmental disabilities have many avenues to find financial assistance. I should know, as my wife and I raised two boys with special needs.

Your youngsters will become young adults one day. Yet, their frailties will continue indefinitely, along with the need to fund never-ending therapies, medical treatments, prescription drugs, and caretaking expenses.

Therefore tap into every available resource to make your dollars stretch further and help your offspring reach their full potential in life.  

Follow our roadmap broken down into three categories: government benefits, private grants, and ways to get paid for caretaking duties.

Government Benefits for Parents of Disabled Child

Parents of children with special needs often find the government benefits are the most well-funded financial assistance option. Our elected officials have the power to raise taxes and borrow money endlessly.

Therefore, the government is the ideal source of grants: free money that you do not have to repay. However, federal and state agencies rarely award grants directly to families. You have to tap into programs with other names.

How Much SSI?

Supplemental Security Income (SSI) is the primary government grant that provides funding directly to parents of children with special needs. However, the youngster’s age, impairment severity, and family income determine the monthly amount.

Example Amount

Many parents ask how much SSI pays for a child with specific conditions such as Autism, ADHD, Down’s syndrome, or other learning disabilities. The monthly amount does not vary by diagnosis.

Instead, Social Security calculates the monthly amount for our adult offspring as follows, which provides a reasonable estimate for how much SSI pays for an Autistic child in 2021 (or any other condition).

CategoryMonthly Amount
Maximum federal money$794
Value of food & shelter($261)
State supplement *$44
Total$573
* The state supplement amount varies

Eligibility rules then result in a trinary decision that also impacts the amount.

  1. Fail parental income limits: $0 (denied)
  2. Fail condition severity parameters: $0 (denied)
  3. Meet both income & condition criteria: $573 (approved)

Income Limits

SSI applies monthly income limits for the parents of children with intellectual disabilities. A process called deeming, which pertains to kids under age 18, unmarried, and living at home, determines if the family qualifies.

Number of ineligible minorsOne ParentTwo Parents
0$3,301$2,025
1$3,698$2,422
2$4,095$2,819

Find the complete SSI earnings guidelines here. Social Security makes the first binary decision based on how much money parents can make:

  1. Income below the standard: $573 monthly (Possibly Approved)
  2. Income above the benchmark: $0 per month (Denied)

Condition Severity

The severity of your child’s intellectual disability can also impact how much SSI pays before age 18. Once again, a specific diagnosis does not influence the amount. Instead, Social Security will make a second binary decision:

  1. Possibly Approved ($573 monthly)
  2. Denied ($0 monthly)

Therefore, parents should become familiar with the Social Security underwriting standards for childhood mental disorders and work with doctors to compile complete documentation before filing a claim.

Age 18

Your child’s age with special needs has a massive impact on how much SSI pays each month because more individuals qualify as of their 18th birthday. The amount frequently soars from $0 to $573 (as noted above) upon reaching this milestone for two reasons.

  1. Parental income limits (deeming) no longer applies
  2. It is easier to meet the adult disability standard: cannot perform any work

Social Security

Two other Social Security programs are another possible source of government support for parents of children with special needs. These grant-like resources might kick in if mom or dad stop working for one of three reasons.

  1. Death: survivor benefits of up to 75% of full retirement benefits
    1. Spouse caring for a disabled youngster
    1. Offspring with a disability (no age limit)
  2. Retire: a minor gets up to 50% of their parents’ retirement benefit
  3. Disabled: a child receives up to 50% of their parents’ SSDI payment

Read more about these Social Security programs here.

Help with Medical Bills

The parents of children with a disability can tap into several government grant-like programs that help pay medical bills. A youngster with special needs requires many extra services that can wrack up unreimbursed expenses quickly.

Medicaid

Medicaid is a government program that helps very low-income parents with disabled children pay their medical bills. Many people know that Medicaid covers healthcare services such as doctor visits, physical therapy, and hospital confinement across the country.

However, as a state-run initiative, Medicaid sometimes includes other services that could significantly help a family. Individuals with special needs frequently have poor oral hygiene along with vision difficulties.

Private Insurance

Subsidies for private health insurance are another way the government helps parents of children with special needs pay medical bills. Families who earn too much money to qualify for Medicaid might still be eligible for two types of grant-like support.

  1. Premium subsidies lower the cost of purchasing and maintaining coverage
  2. Cost-sharing subsidies lower expenses when using coverage
    1. Deductibles
    1. Copayments

Request a health insurance quote to compare plan options and sign up during the annual open enrollment. People experiencing a qualifying life event can enroll without waiting.

Tax Breaks

Families with higher earnings can get help with left-over medical bills connected to their child with developmental disabilities because they pay income taxes. The IRS supports discounts on unreimbursed medical expenses through three vehicles.

  1. Tax-deductible medical and dental expenses lower costs for families that meet two spending floors
    1. Itemized deductions exceed the personal deduction
    1. Unreimbursed medical and dental expenses exceed 7.5% of Adjusted Gross Income
  2. Flexible Spending Accounts (FSA) use pretax dollars that begin saving money immediately (no spending floors) but have annual contribution limits
    1. Individual: $2,750
    1. Two-parent: $4,500
  3. Health Savings Accounts (HSA) also use pretax dollars that begin saving money right away (no spending floor) for families with a high deductible health plan (HDHP) but have higher yearly contribution limits
    1. Self-only: $3,650
    1. Family: $7,300
    1. Age 55 or older catch up: $1,000 (additional amount per person)

Housing Assistance

Government benefits often include housing assistance for families with a disabled child. Once again, the grant-like aid flows primarily to low-income households, a common issue when one parent has never-ending caretaking duties.

Housing & Urban Development

The Department of Housing & Urban Development (HUD) provides three assistance programs to help low-income families afford a decent dwelling.

  1. Privately Owned Subsidized Apartments: helps property owners offer reduced rents
  2. Public Housing: affordable apartments for the elderly and persons with disabilities
  3. Housing Choice Voucher Program (Section 8): subsidizes monthly rental charges

Veterans Administration

The Veterans Administration (V.A.) provides housing assistance to former service members and their surviving spouses. The VA benefits help veteran families to buy, refinance, build, improve, and update homes.

  • Grants for particular adaptations to foster independent living
  • Home loans with smaller down payment requirements
  • Financial counseling to avoid mortgage foreclosures

Department of Agriculture

The U.S. Department of Agriculture (USDA) provides homeownership opportunities to rural Americans and home renovation and repair programs.

USDA also provides financing to elderly, disabled, or low-income rural residents in multi-unit apartment complexes to ensure that they can make rent payments.

Sibling Scholarships

Government benefits can also include scholarships for siblings of children with special needs. Complete the Free Application for Student Financial Aid (FASFA) form to see if you qualify for education grants.

The FAFSA criteria favor families with disabled family members because they often have exceptional financial needs.

  • Lower incomes when one parent must stop working to provide care at home
  • Fewer countable resources, given the extra expenses of early interventions

Many schools award need-based scholarships based on the “expected family contribution” derived from the FAFSA data. A sibling could attend college on a free ride because of the economic hardships of a brother or sister with special needs.

Private Grants for Parents of Disabled Children

Parents of children with special needs can seek out grants from foundations and non-profit charitable organizations. However, these private entities often rely on the generosity of donors to fund their mission.

In other words, most private grants will be relatively small. However, the places to look are abundant, so a diagnosis-based approach might help you narrow down the possibilities.

Cerebral Palsy

Parents of a child with cerebral palsy can apply for grants to help with the overwhelming medical expenses for surgeries, travel to expert hospitals, lodging, restaurant meals while on the road, etc.

Begin your search for grants at charitable organizations dedicated to addressing the needs of individuals dealing with cerebral palsy.

Muscular Dystrophy

Parents of a child diagnosed with muscular dystrophy can apply for private grants to help offset the costs of expensive home modifications, wheelchairs, ramps, customized vans for transportation, and other types of adaptive equipment.

Begin your search for grants at non-profit organizations dedicated to addressing the needs of individuals dealing with muscular dystrophy rather than research.

Autism Spectrum Disorder

Parents with autistic children can apply for grants to offset costs of therapies, sensory equipment, service dogs, iPad tablets, swimming lessons, vacations, and other critical needs not covered by insurance.

Begin your search for grants at charitable organizations dedicated to addressing the needs of individuals dealing with an autism spectrum disorder.

Get Paid to Care for Disabled Child

Sometimes, parents can get paid by the government to care for their disabled adult child in their home. Many states provide benefits directly to family members to compensate them for their time and effort, but others do not – therefore, research the programs available in your area.

Medicaid Payments

Many states utilize Medicaid to disperse funding that enables family members to get paid to care for an adult child with special needs. The benefits help recipients remain in their homes and active in their communities.

For example, my wife and I receive money every month through the New Jersey Personal Preference Program (PPP), a Medicaid-based initiative. PPP sets a monthly budget and a fiscal intermediary process claims for the support services we provide to our two full-grown children with developmental disabilities.

Eligible Activities & Tasks

BathingDressing
ErrandsGrocery shopping
GroomingHealth-related
LaundryMeals
ToiletingTransfers/mobility

DDD Payments

Parents and siblings might also be able to get paid to care for an adult child with special needs through their state Department of Developmental Disabilities (DDD) self-directed employee program.

In the past, the DDD funded dedicated day programs to provide stimulation, organized activities, and supervision for their target population. However, the COVID-19 pandemic changed everything when these programs needed to close or limit attendance.

Somebody needed to care for these individuals, so New Jersey DDD allowed family members to act as self-directed employees. For instance, my wife and I began receiving extra money every month in mid-2020 and continue getting significant payments through 2021 and perhaps into 2022 and 2023 as well.