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 it is never too soon to learn how to navigate the system. Learn to stretch dollars further and help your offspring reach their full potential.
Follow the three-part outline to the most crucial supports: government benefits (SSI & Medicaid), compensation for caretakers, and housing assistance.
Benefits for Parents Caring For a Disabled Child
Parents caring for children with special needs often find that two foundational government benefit programs offer essential financial assistance: Supplemental Security Income and Medicaid.
- Benefits for Parents Caring For a Disabled Child
- States Paying Parents to Care for Disabled Child
- Housing Assistance for Families with Disabled Child
Supplemental Security Income (SSI) is the first government benefit to help parents when caring for a child with a developmental disability. SSI provides monthly cash payments to eligible recipients, with qualifying criteria that change at age 18.
SSI Under 18
Some low-income parents caring for a child under 18 with a developmental disability might qualify for SSI benefits immediately if they meet two sets of criteria.
- Your youngster meets the childhood disability definition
- Low-birth weight
- Failure to Thrive (Developmental Delay)
- Countable household income is below the deeming threshold
SSI at Age 15
Parents of any income level caring for a child with a disability should begin preparing for SSI benefits no later than their teenager’s fifteenth birthday. You do not want to jeopardize eligibility inadvertently.
Transfer any resources in your child’s name to another person or special needs trust. Social Security establishes a three-year look-back period on these assets. For instance, those savings bonds that friends and family members gave as gifts you filed in a shoebox could bite you.
Establish a special needs trust before your child reaches adulthood to preserve eligibility for needs-based government benefits such as SSI and Medicaid, which have resource limits. The trust enables you to accumulate assets without holding them in the beneficiary’s name.
SSI Over 18
More parents caring for a child over 18 with a disability can take advantage of SSI because their household countable income no longer reduces the benefits to zero through deeming. Now they only consider the earnings of your young adult.
Apply for SSI when your child turns 18, knowing that the parent’s income no longer matters. The monthly benefit check offers meaningful financial assistance. Plus, if eligible, your young adult automatically qualifies for Medicaid.
Medicaid is the second government benefit that might help parents when caring for a child with a developmental disability. Medicaid eligibility rules also change at age 18, and the program might provide four types of financial support over time.
- Free health insurance for the family
- Free dental insurance for the household
- Funding of day programs for special needs adults
- Compensation for family caretakers (see below)
Medicaid Under 18
Medicaid is a crucial government benefit for low-income parents caring for a disabled child under 18 who cannot afford proper medical and dental treatment.
Apply for Medicaid coverage knowing that projected income is the qualifying criteria, not what the household earned last year or in recent months. Sometimes, caretaking duties run in cycles. If your child’s medical condition or behavioral issues flare up, one parent may have to cut back on work hours or quit their job.
Medicaid Over 18
Medicaid is a critical government benefit for all parents caring for an adult child (over 18) because it offers financial assistance far beyond medical treatment and dental work.
- Medicaid funds day programs for adults with special needs in many states. The yellow bus might stop picking up your child every day to take them to a public school once they surpass their 21st birthday.
- Medicaid sometimes pays family members to care for disabled adults in their homes. Each state determines what benefits to offer if any. See below for details.
SSI recipients automatically qualify for Medicaid, so apply for this benefit first. Ensure you do not jeopardize eligibility by holding more than $2,000 in countable resources and establishing a special needs trust.
States Paying Parents to Care for Disabled Child
Out of necessity, we must divide our list of states paying parents to care for a disabled child at home in 2023 into two age groups: those under eighteen and those entering adulthood. Medicaid eligibility drives long-term benefits.
Fewer states pay parents to care for their young children (under 18) with disabilities when the family earns too much money to qualify for Medicaid.
Government money for stay-at-home mothers might prove to be a more fruitful angle than chasing after temporary compensation available through paid family leave and unemployment programs.
Paid Family Leave
Several states compensate parents for caring for a young child with a disability through Paid Family Leave programs. Eligible mothers and fathers can take time off from work for a brief period without losing all of their income.
Below are the states offering paid family leave to care for a child with a serious health condition in 2023 and in the future.
Several states compensate parents for caring for their young child with a developmental disability through unemployment insurance. However, eligibility for the program is strict, and the benefits typically last for six months or less.
To qualify for unemployment benefits, you must have lost your job, be available for work, and actively seek new employment. Plus, your state’s “good cause reason to quit” must include caring for a family member with a serious medical condition.
In other words, you might be eligible to collect unemployment after your caretaking duties cease. Below is a sampling of states with amenable good cause definitions.
|Oregon||Rhode Island||South Carolina|
More states pay parents to care for their adult children with disabilities because their offspring often become eligible for Medicaid on their 18th birthday, which covers long-term services and support.
Many states offer personal care services to Medicaid recipients to facilitate their staying at home rather than in an institutional setting. The initiatives help control Medicaid spending.
Below is a sampling of links to the state programs which may support long-term compensation for family members tending to the needs of others under age 65.
The Family Caregiver Alliance publishes a comprehensive listing of resources. If you did not find your state above, follow the map to appropriately labeled links instead of researching Home and Community-Based Services, Community First Choice, 1915 (K) and 1915 (C) waivers, and other programs with incomprehensible names that lead you in circles.
Housing Assistance for Families with Disabled Child
Housing assistance is a critical resource for parents with disabled children because rent and mortgage payments are families’ most significant monthly expenses.
The parents of children with special needs often sacrifice their career aspirations, meaning they might qualify for these government-sponsored housing programs aimed at low-income households.
Housing grants for families with disabled children are available to low-income households. Many parents of kids with special needs qualify because they must reduce work hours.
Please remember that the federal government does not award grants to individuals or families except those looking to buy a house for the first time. Instead, the free money typically flows to state agencies and non-profit organizations to foster a public good.
Apply for the appropriate grant through the recipient agency.
- Section 811 Supportive Housing for Persons with Disabilities
- Section 8 Rental Housing Choice Vouchers
- FHA Down Payment Grants To Buy a House
Housing assistance for families with a disabled child can also mean financial help with home modifications. The IRS offers tax breaks for medically necessary adaptations, giving you three ways to take advantage.
- Schedule A: Deductible Medical and Dental Expenses
- Flexible Spending Account (FSA)
- Health Savings Account (HSA)
Have your doctor write a note prescribing each specific modification and file it in a safe place before incurring any expenses. Consult your tax advisor before taking a deduction.
Cerebral Palsy Housing
Housing assistance for families with a child with cerebral palsy might rely on government programs for low-income households plus IRS tax breaks for applicable home modifications.
Your doctor might prescribe many of these adaptations for your child with cerebral palsy.
- Widening of hallways and doors
- Building wheelchair ramps
- Installation of hardwood floors or low-pile carpeting
- Purchase of stair lift chairs
Government programs for low-income households provide housing assistance for families with autistic children. Now supplement this help with IRS tax breaks for needed modifications.
Your doctor might prescribe several adaptations for your child with an autism spectrum disorder.
- Removal of fluorescent lighting and replacement with softer LED
- Upgrading blinds and shades to control outdoor light intensity
- Install surveillance technologies to alleviate intrusion anxiety
- Mount soundproof panels and curtains to minimize noises
- Deploy alarm systems and locks to prevent wandering