6 minute read

Generation Caregiver for a Child with a Disability - What You Need to Know

If you are a caregiver for a special needs child, know that you have support & resources available. T&W reviews helpful information for caregivers here.

Patrick Hicks

Patrick Hicks, @PatrickHicks

Head of Legal, Trust & Will

Having a child is one of the great joys and wonders of the human experience — if you’re into parenthood, of course. According to the U.S. Census, 4.3 percent of American children (under the age of 18) had a disability in 2019. This was an 0.4 percent increase from the Census in 2008. 

What this data shows is that an increasing share of parents in the U.S. are providing care to a child with a disability. Further, expecting parents increasingly need to consider the possibility of having a special needs child and make the necessary preparations. 

This guide will explain what to expect and what you should know about being a caregiver for a child with disabilities

What Does It Mean to be a “Caregiver” for a Special Needs Child? 

Before we define what it means to be a caregiver for a child with a disability let’s first begin with a definition of the term itself. 

A disabled child is a dependent under the age of 18 who requires additional attention and necessities that are not required by other children. This definition is quite broad, and serves as an umbrella term for a variety of diagnoses and conditions. Any child with a chronic or terminal illness, cognitive development issue,  psychiatric issue, or physical impairment could be determined to have special needs. Examples of special needs conditions include autism, deafness, ADHD, and cystic fibrosis. 

Some children can go for quite some time without detection or diagnosis. However, the special needs designation can be helpful such that the child can be provided with the necessary attention, care, and support so that they can thrive.

A caregiver for a child with disabilities is any adult who provides care for the child on a regular basis. The parents of the child are typically caregivers for the child by default, but a caregiver can also be a paid professional who was hired. Other family members and trusted friends can also serve as caregivers for a special needs child on a regular or intermittent basis. 

The caregiver for a child with disabilities definition becomes a little more clear when understanding their possible responsibilities. 

What do Caregivers Do for Special Needs Children? Special Needs Child Care Responsibilities

The key responsibility of a caregiver is providing the care and support necessary to help elevate the quality of life of the individual with special needs. 

However, the nuts and bolts of executing this key responsibility varies widely based on each child’s unique circumstances and set of needs. The level of additional support and care may be extensive, while other children may require minimal intervention. 

Here are some examples of a disabled child care responsibilities below. Please note that these are general examples, and the actual list of responsibilities would depend on your child’s unique needs and circumstances:

  • Learning about and evaluating your child’s needs: The first step to providing care for a child with a disability is understanding their unique needs. The more you know, the better you can prepare. Educating yourself regarding your child’s specific condition will expand your frame of reference.

  • Staying positive: Children are highly intuitive and can often sense their parents’ emotions. The stability of a parent’s mood leads to the stability of the child’s emotional environment. Although we are all human and are allowed to make mistakes, it’s critical not to get upset or look down on your child because of their disability. The disability can certainly present unique challenges and hurdles, but it does not make your child unfit. This is a new normal to embrace such that you can stay positive and fair and create a safe environment for your child.

  • Enroll in special education if needed: In some cases, it is your child’s teacher who will provide a referral to evaluate your child’s needs. It’s best to seek out a professional evaluation and enroll your child in special education if it’s recommended. States have special education laws that require the provision of free appropriate education at different levels.

  • Assist with homework: Most parents cannot escape homework duty when they have children. A child with a disability may require additional support and assistance when completing homework. However, it is important here not to do the homework for them. It is important to ask questions and guide their critical thinking so that they can figure out the answers.

  • Encouraging self-confidence and independence: Although children require care and support, it is important to cultivate their sense of self-confidence and independence. This is true for all children, but may require special attention in the case of a child with a disability. A child may struggle with feelings of isolation or inferiority, and may struggle when in social settings outside the home. Here, a parent should model positivity and resilience. Setting small goals and exercises can help the child develop more confidence and independence over time.

  • Discipline: All children require discipline, regardless of their disability status. Every parent will have different beliefs and values surrounding the definition of discipline. In most cases, it involves setting boundaries and rules that must be respected. There may be certain consequences if the child does not respect these boundaries.

  • Creating a healthy lifestyle: Do what you can to help your child develop a healthy lifestyle. This might include exposing them to good nutrition, movement practices that feel good to them, and developing healthy sleep habits. Making sure your child is properly nourished and rested will set them up for success!

Other Common Questions About Being Caregiver for Special Needs Child

When you are first faced with the role of being a caregiver for a child with disabilities, it’s only natural to have lots of questions. Any new parent has lots of questions regardless, and changing your perspective to accommodate your child with a disability certainly adds a layer. 

Here are a number of answers to several common questions about being a caregiver for a child with special needs.

What Challenges Face the Parents of a Child with a Disability?

Caring for a child with a disability can be very rewarding, but in reality, it can also present a unique set of challenges. These are compounded in addition to the challenges associated with parenting any child, so it’s important to be aware and make the necessary preparations.

Examples of challenges include:

  •  The learning curve of educating oneself on a disability and caregiving requirements

  • Researching and locating resources and treatments that will be effective for your child

  • Coping with the emotional and physical demands of caregiving

  • Managing frequent appointments with specialists, therapists, medical providers, and school administrators (including transportation and attending appointments)

  • Spending time advocating for your child’s needs

  • Paying for treatments, technology or tools not covered by insurance or public institutions

It should be noted here that the myriad of challenges presented by caring for a child with a disability is often counterbalanced by its numerous rewards. Even still, these challenges can create stress for the caregiver(s). It is important to prioritize one’s own self-care so that you can continue providing great care for your child. There are many resources available for the support of caregivers, including online support groups and wellness programs.

What Financial Help is Available for Parents of Special Needs Children?

Providing care for a child with a disability has certain financial requirements, and l luckily, financial assistance is available. There are a number of government programs that are designed to help ease the burden of financial stressors. 

For instance, children with disabilities are eligible for Medicaid and the Children’s Health Insurance Program (CHIP). These are both examples of subsidized healthcare programs. There are also a number of programs that provide direct financial relief, or help families secure proper shelter and food. Examples of programs include Supplemental Security Income (SSI), Temporary Assistance for Needy Families (TANF), and the Supplemental Nutrition Assistance Program (SNAP). Various nonprofits also offer grant opportunities. 

Are Special Needs Children Eligible for Supplemental Security Income (SSI)?

Children under the age of 18 with disabilities may qualify for Supplemental Security Income (SSI) if they meet certain parameters. Some of these parameters have to do with income level and the type of disability. 

Payment rates and levels vary on a state-by-state basis, and the child’s conditions are reevaluated every three years. Any child who turns 18 can still qualify for SSI but is evaluated based on a new set of parameters for adults with disabilities. 

How Can I Ensure Long-Term Financial Care for My Special Needs Child? 

You can absolutely plan ahead to ensure long-term financial care for your child with disabilities. One of the key pathways to financial planning is the creation of a Special Needs Trust.

A Special Needs Trust is a special purpose Trust that you can set up as a part of your Estate Plan. This type of Trust is designed such that you can ensure your child can receive financial support, especially if anything were to happen to you and you’re not able to care for them yourself. Further, this Trust can be set up with special terms and conditions such that any financial support your child receives will not jeopardize their eligibility for government assistance programs. (For instance, SSI has a set income limit in order for a person with a disability to qualify.)

By setting up this Trust, you can have peace of mind knowing that your child will have a financial safety net even if you were to become incapacitated or pass away. You can appoint a trustworthy Trustee who will manage and follow the terms of the Trust on your behalf.

Are You a Caregiver for A Special Needs Child? Update Your Estate Plan Today

If you’re a caregiver for a disabled child, then you have first-hand experience of how challenging yet rewarding it can be. This guide went over what it means to be a caregiver, and some of the challenges and responsibilities that are involved. 

Caring for a child with a disability often requires additional financial demands, and not every family is ready to meet them. Luckily, there are several governments and nonprofit programs that can provide some relief. At the same time, it’s equally as important to be thinking about the long-term. How will your child be taken care of if you are no longer around? Is there a way to provide them with long-term financial support? The answer here is a resounding “yes!” There is a special type of Trust that is designed just for you: the Special Needs Trust. Be sure to check out our guide on this Trust and find out what all it has to offer for you and your child. 

Having a child is an important trigger event that should get any parent thinking about planning their estate. There are many tools and options available that can be customized to fit your needs and help ensure that your family is protected. For instance, it’s critical to set up a Will to make a plan for passing down your property, as well as to name a Guardian for your child. You may also consider setting up a Conservatorship for a child who may need extra support and intervention when they reach adulthood. Last but not least, a tool like a Special Needs Trust can help ease your mind knowing that your child will have a financial safety net in the long run.

If you feel compelled to create an Estate Plan, there’s no reason to hesitate or procrastinate! That’s because Trust & Will has a rich offering of estate planning solutions that are designed to meet every family’s unique needs. Take our free quiz to see where you should get started, or compare our different estate planning options today!

Is there a question here we didn’t answer? Browse more topics in our Learn Center or chat with a live member support representative!

Trust & Will is an online service providing legal forms and information. We are not a law firm and we do not provide legal advice.