Parenting is full of love, joy, hugs and, of course, sleepless nights. The love parents feel for their children is fierce and worth the proverbial roller coaster ride. However, parenting children with disabilities presents its own unique set of struggles.
I am a mother of children with disabilities, a special education teacher, professor and a disability advocate. Parents of children with disabilities are more than our children’s caregivers; we are often our children’s first teachers, therapists and, of course, their advocates. We are there every moment to ensure that our children have accessible classrooms, play spaces and more, in a world that is often unwelcoming to them. Serving as our children’s advocate is like a second job. It is also very expensive.
Fortunately, there are government benefits for parents caring for a disabled child. Here, Heather Dailey and Giselle Ramirez, two parents of children with disabilities who also happen to be disability benefits experts, reveal what you need to know about these programs.
Why parents of a disabled child should be empowered to pursue benefits
The CDC defines developmental disabilities as a type of condition that can impact the physical function, cognitive function, speech and language and/or behavioral function of an individual. Examples include deafness or blindness, autism, learning disabilities or cerebral palsy. These conditions are often diagnosed in early childhood and may last through a person’s life, impacting them everyday. According to the Centers for Disease Control and Prevention (CDC), about one in six children between 3 and 17 years of age in the United States has one or more developmental disabilities. That comes out to about 17% of all children in that age group.
Nonetheless, children with disabilities and their needs are often overlooked when it comes to parenting discussions and support.
Ramirez, an office executive and mom of two children with disabilities, helps administer two local disability advocacy programs in New York City, including Protect Special Education New York and Bronx Special Kids. She’s passionate about eliminating “the stigma around applying for, and receiving, disability benefits for our children” and wants people to understand that “there is a different cost to being the parent of a child with disabilities.”
Receiving disability benefits “isn’t a handout,” but rather something that children with disabilities deserve, because it’s a societal good, just like education, notes Ramirez. “We all pay taxes, and our taxes go to pay for these services,” she says.
Additionally, Ramirez adds that children with disabilities need more resources because their needs are often greater than children without disabilities. “Our children need special strollers for mobility, special orthopedic shoes, have certain dietary needs or feeding issues that go way beyond being picky eaters due to sensory integration disorders and more,” she explains.
Receiving disability benefits “isn’t a handout,” but rather something that children with disabilities deserve, because it’s a societal good, just like education.
— Giselle Ramirez, a disability benefits expert
Heather Dailey, a mother of an 11-year-old boy with a disability, and a licensed Social Worker. Dailey is also a parent elected member of the Citywide Council of Special Education in New York City and a founding member and administrator of Protect Special Education New York, an advocacy group for parents of children with disabilities who attend public schools.
Dailey says the special therapies, treatments, foods, clothes, adaptive needs and more add up to a “disability tax” that disabled people and their families must pay. Not to mention that parents and caregivers often take time off of work to care for a child who has disabilities.
But supplemental income can enable them to “fill in the financial gaps to help manage their children’s disability.” Both Ramirez and Dailey receive Medicaid benefits for their children with disabilities and say those benefits have been helpful when parenting their children. Ramirez also receives WIC benefits for her younger child which has been helpful with her child’s special dietary needs.
Federal benefits for parents of children with disabilities
The federal government offers many benefits for parents caring for a disabled child, 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 disabled children have special dietary concerns, limited diets, sensory issues around eating that go far beyond being picky eaters and, in turn, benefit from WIC.
The WIC program provides food benefits in the form of electronic benefit cards, vouchers and paper checks to cover infant cereal, iron fortified adult cereal, fruit, vegetables, and more healthy food. The program also supports breastfeeding and for those who do not or cannot fully breastfeed provides infant formula and medical foods when 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 five are eligible for WIC benefits. They must meet income guidelines, a state residency requirement and be individually determined to be at “nutritional risk” by a health professional.
Learn more about eligibility for and the benefits of WIC program.
Supplemental Nutrition Assistance Program (SNAP)
SNAP is a supplemental food assistance program that helps provide funds so that people can buy the food they need. Snap benefits can be used at local grocery stores and can often be used at farmers markets to purchase fresh produce.
To be eligible for SNAP, one must meet certain income requirements, which vary by state. It is important to note that the eligibility for disability for SNAP benefits is not necessarily guaranteed based on your child’s disability if your family does not meet the income requirements for SNAP.
To be eligible for SNAP under the disability category one must meet certain criteria.
Learn more on the USDA site.
Temporary Assistance for Needy Families (TANF)
The Temporary Assistance for Needy Families (TANF) program provides funds to states and various United States’ territories to provide families with financial assistance and related support services. Some examples of state-administered programs include child care assistance, job preparation and work assistance.
TANF is a program that helps families in need get back on their feet with cash assistance, job training so that parents can re-enter the workforce and can often help cover the cost of childcare. These services can be helpful to parents of disabled as many parents leave the workforce and lose income inorder to care for their children.
There are various requirements for eligibility to this program. The majority of TANF eligibility requirements are income based and include the household’s 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 have a physical or mental disability or who are blind. If you care for a child or teenager with a disability and have limited income and savings or other resources, your child may be eligible for SSI.
Children under age 18 can get SSI if they meet Social Security’s definition of disability for children and there are limited income and resources in the household.
Learn more about how Social Security defines a disability and other eligibility requirements.
Medicaid
Medicaid is a program for low-income people whose income and/or resources are below certain levels. Eligible populations include children, pregnant women, single individuals, families and individuals certified blind or certified disabled. In addition, persons with medical bills may be eligible for Medicaid even if their income and resources are above the allowable Medicaid income levels. Medicaid income and resource levels generally change on January 1 of each year. Only certified blind individuals, certified disabled individuals, and individuals over 65 have a resource test.
Learn more about Medicaid programs and eligibility.
Katie Beckett Medicaid Waiver
Katie Beckett is an eligibility category in Medicaid that allows certain children under age 19 who have long-term disabilities or complex medical needs to become eligible for Medicaid coverage. Katie Beckett eligibility enables children to be cared for at home instead of an institution. With the Katie Beckett Waiver, only the child’s income and resources are used to determine eligibility.
There are other Medicaid Waivers like the Katie Beckett Waiver available to children with disabilities.
Learn more about these waivers that “waive” the typical requirements for applying to Medicaid and other disability benefit programs at Kidswaivers.org.
When applying for benefits, “think about your child in their most difficult moments.”
— Heather Dailey, a licensed social worker
Final advice on applying for disability benefits
When applying for benefits, “think about your child in their most difficult moments,” suggests Dailey. This is often the key to accessing benefits that do not have a minimum income requirement, such as Medicaid or SSI benefits.
Dailey recommends asking yourself whether your child can dress themselves independently? Or do they need help or assistance in learning adaptive skills that go beyond normal age-appropriate developmental range?
While it may be hard to face these questions, remember that “your kid is still your kid,” no matter how you answer on these forms and no matter what their disability diagnosis is, says Dailey.
I give thanks every day for my two children. They have taught me more about empathy and kindness than I could have ever dreamed of. My job as their parent is not to make them the same as their non-disabled peers, but to ensure that the world they live in is accessible and welcoming. My job is to ensure that they know how wonderful and awesome they are and to help them thrive and show up as their fully authentic differently abled selves. Disability benefits allow me to do that, and every parent of a child with disabilities should feel empowered in the same way.