Parenting is full of love, joy, hugs, and of course sleepless nights. The love a parent feels for their child is intense and worth the so-called rollercoaster ride. However, raising a child with a disability comes with its own struggles.
I am a mother of a child with a disability, a special education teacher, a professor, and a disability advocate. Parents of children with disabilities are more than just their children’s guardians. We are their children’s first teachers, therapists, and of course, advocates. We are always there to make sure they have accessible classrooms, playgrounds, and more in a world where they are often not welcomed. Working as a child’s advocate is like a second job. It is also very expensive.
Fortunately, there are government benefits available to parents of children with disabilities. Here, Heather Daly and Giselle Ramirez, parents of children with disabilities and disability benefits experts, reveal what you need to know about these programs.
Why parents of disabled children should have the right to claim benefits
The CDC defines a developmental disability as a type of condition that can affect an individual’s physical function, cognitive function, speech and language, and/or behavioral function. Examples include hearing or vision impairments, autism, learning disabilities, and cerebral palsy. These conditions are often diagnosed during childhood and can last a lifetime and impact an individual every day. According to the Centers for Disease Control and Prevention (CDC), approximately 1 in 6 children ages 3 to 17 in the United States have one or more developmental disabilities. This represents approximately 17% of all children in that age group.
Despite this, children with disabilities and their needs are often overlooked in parenting discussions and support.
Ramirez, an office executive and mother of two children with disabilities, helps run two local disability assistance programs in New York City, including Protect Special Education New York and Bronx Special Kids. She is passionate about eliminating “the stigma surrounding applying for and receiving disability benefits for children” and wants people to understand that “being a parent of a child with a disability comes with a different price.”
Ramirez points out that disability benefits are not a “handout” but a social good, like education, that children with disabilities deserve. “We all pay taxes, and those taxes go towards paying for these services,” she says.
Moreover, Ramirez adds, children with disabilities require more resources because their needs are often greater than those of their non-disabled peers: “Our children require special strollers or special orthopedic shoes for mobility, and they have specific dietary needs and feeding challenges that go far beyond picky eating due to things like sensory integration disorders,” she explains.
Receiving disability benefits is not “charity” but a social good, just like education, and is something that children with disabilities deserve.
— Giselle Ramirez, Disability Benefits Specialist
Heather Daly is a licensed social worker and the mother of an 11-year-old boy with disabilities. She is also a parent-elected member of the New York City Special Education City Council and is the founding director and director of Protect Special Education New York, an advocacy group for parents of children with disabilities in public schools.
Daly says that special therapies, treatments, food, clothing and adaptive needs all add up to a “disability tax” that people with disabilities and their families must pay — not to mention that parents and caregivers often have to take time off work to care for a child with a disability.
But the supplemental income helps “bridge the financial gap to address our children’s disabilities.” Ramirez and Daily say they receive Medicaid benefits for their disabled children, which they say helps with raising them. Ramirez also receives WIC benefits for her younger child, which helps with the child’s special dietary needs.
Federal benefits for parents of children with disabilities
The federal government offers many benefits to parents who care for children with disabilities. Below is a list of federal benefit programs available to children with disabilities. Please note that eligibility varies by state.
Special Supplemental Nutrition Program for Women, Infants, and Children (WIC)
Many children with disabilities have sensory issues with food that go far beyond special dietary concerns, food restrictions, or picky eaters, and as a result, they benefit from WIC.
The WIC program provides food benefits in the form of electronic benefit cards, vouchers, or paper checks that cover infant cereals, iron-fortified adult cereals, fruits, vegetables, and other healthy foods. The program also supports breastfeeding, and for those who do not or cannot breastfeed adequately, it provides infant formula and medical foods if prescribed by a doctor for a medical condition.
According to the federal WIC program’s website, pregnant, postpartum and breastfeeding women, infants and children up to age 5 are eligible for WIC benefits. Eligible individuals must meet income criteria, state residency requirements and be individually determined by a medical professional to be at “nutritional risk.”
Learn more about WIC program eligibility and benefits.
Supplemental Nutrition Assistance Program (SNAP)
SNAP is a supplemental food assistance program that provides funds to help people buy the food they need. SNAP benefits can be used at local grocery stores and often can be used to buy fresh produce at farmers’ markets.
To qualify for SNAP, you must meet certain income requirements that vary by state. Please note that if your family does not meet the SNAP income requirements, disability eligibility for SNAP benefits based on your child’s disability is not guaranteed.
To qualify for SNAP benefits under the disability category, you must meet certain criteria.
Visit the USDA site for more information.
Temporary Assistance to Needy Families (TANF)
The Temporary Assistance for Needy Families (TANF) program provides funding to states and various U.S. territories to provide financial assistance and related support services to families. Examples of state-administered programs include child care assistance, job preparation, and job assistance.
TANF is a program that helps struggling families get back on their feet with cash assistance and job training, which allows parents to go back to work and often helps cover child care costs. These services are helpful for parents with disabilities, as many parents quit their jobs and lose income to care for their children.
Eligibility requirements for this program vary: TANF eligibility requirements are largely income-based and include household size and income level.
Learn more about TANF eligibility requirements.
Social Security Income (SSI) for Children
SSI provides monthly cash payments to help meet the basic needs of children who are physically, mentally or visually impaired. If you are caring for a child or teen with a disability and have limited income, savings or other assets, your child may be eligible for SSI.
Children under the age of 18 may receive SSI if they meet Social Security’s definition of a child’s disability and the household has limited income and assets.
Learn more about how Social Security defines disability and other eligibility requirements.
Medicaid
Medicaid is a program for low-income people whose income and assets are below certain levels. Eligible people include children, pregnant women, single people, families, and people who are certified blind or disabled. Also, people who incur medical expenses may be eligible for Medicaid even if their income or assets exceed the Medicaid income allowance levels. Medicaid income and asset levels usually change each year on January 1. Only people who are blind, disabled, and over 65 years of age are subject to the asset test.
Learn more about the Medicaid program and eligibility.
Katie Beckett Medicaid Waiver
Katie Beckett is a Medicaid eligibility category that allows certain children under the age of 19 who have long-term disabilities or complex medical needs to qualify for Medicaid coverage. Katie Beckett eligibility allows a child to be cared for in their own home rather than in an institution. The Katie Beckett waiver uses only the child’s income and assets to determine eligibility.
There are other Medicaid waivers available for children with disabilities, such as the Katie Beckett waiver.
Visit Kidswaivers.org to learn more about these waivers, which are “waivers” of the general requirements for applying for Medicaid and other disability benefit programs.
When applying for benefits, “think about your child in their most difficult time.”
— Heather Daly, Licensed Social Worker
Final advice on applying for disability pension
When applying for benefits, “think about your child when they’re going through their toughest times,” Daly suggests. This is often key to receiving benefits that don’t have minimum income requirements, like Medicaid or SSI benefits.
Daily suggests asking yourself whether your child can dress themselves or if they need help or support in mastering adaptive skills that are outside the range of typical development for their age.
Facing these questions can be difficult, but Daly says it’s important to remember that no matter how you answer these forms or what the disability diagnosis is, “your child is still your child.”
I am grateful every day for my two children. They have taught me more empathy and kindness than I ever dreamed possible. My job as a parent is not to make them like their non-disabled peers, but to ensure that the world they live in is accessible and welcoming. My job is to let them know how amazing and wonderful they are, and to help them grow and emerge as their fully authentic disabled selves. Disability benefits allow me to do so, and every parent of a child with a disability should feel similarly empowered.