In the United States, approximately 18.5 percent of children under age eighteen are considered children with “special needs.” That does not mean that they are not smart, talented, or capable. Rather, it simply means that they have specific challenges that a “normal” or “typical” student would not face.
The “Special Needs” Designation: Flexible, Useful, and a Matter of Context
An Umbrella Term
“Special needs” is an umbrella term for needs that arise from a wide array of diagnoses, from those that resolve quickly to those that will pose challenges for a person’s entire life, from those that are relatively mild to those that are quite profound. “Special needs” result from developmental delays, medical conditions, psychiatric conditions, and congenital conditions that require some form of accommodation so that children can reach their fullest potential. Get to know any two families of children with special needs, and they may seem to have little in common. No matter the reason, the designation of “special needs” can be useful, as it can help the child obtain needed services, have appropriate goals established, and help the parents and family gain an understanding of the child and the stresses the family may face.
The “Can’ts”: A Narrow Perspective
Special needs are too often defined by what a child can’t do—by milestones unmet, foods prohibited, activities avoided, or experiences denied. These “can’ts” often hit the family, and often the child, hard and may make special needs seem like a tragic designation. Often family and friends feel compelled to say “I’m sorry” when they hear that a child has special needs. However, there are also many joys in being or having a special needs child, and most often the family is not sorry at all that they have their amazing child to love and learn from.
Different Families, Different Concerns
Each child with special needs faces different challenges and concerns, and so does each family of a child with special needs. A family dealing with developmental delays may have different concerns than one dealing with chronic illness. These families may have different anxieties than those dealing with mental illness, learning problems, or behavioral challenges. “Special needs” is a very broad term, and every situation is different. Families should focus on seeking the help and guidance needed to help them address their particular concerns and their child’s specific needs. Some parents will always mourn their child’s lost potential, and some conditions become more troubling or difficult over time. Other families may find that their child’s challenges make triumphs sweeter and that weaknesses are often accompanied by amazing strengths. Neither is right or wrong, but both kinds of responses need to be recognized and appreciated.
The Broader Context
As the term “special needs” can mean a number of things, it can also mean something different to different people or entities. In the world of special education, the term generally means a child who has physical or intellectual needs that cannot be fully or adequately addressed in a regular education classroom. However, how the term is used and the meaning that it has is very much dependent upon the environment or purpose for which it is being used.
A child with special needs may need different or extra supports in the classroom that render the child eligible for special education services. Yet the child’s special needs may or may not impact their eligibility for other services or benefits. Conversely, a child may have a need that qualifies him or her for governmental benefits, but the child may not need special education services. Each of the child’s needs or eligibilities may need to be investigated and addressed separately.
The Four Categories of Conditions Creating Special Needs
There are four main kinds of conditions that give rise to special needs.
1. Physical/Medical/Sensory Impairment
These conditions can include blindness, visual impairment, deafness, limited hearing, cancer, heart defects, muscular dystrophy, and cystic fibrosis. They also include chronic conditions like asthma and diabetes, congenital conditions like cerebral palsy and dwarfism, and health threats like food allergies and obesity. A child may need frequent medical testing, hospital stays, equipment, and accommodations for disabilities. Establishing a good support system is very important; it will become critical when dealing with uncertainty and any medical crises.
2. Developmental Disabilities
Developmental disabilities can both change the vision of a child’s future and create immediate difficulties in terms of care and education. Diagnoses such as autism, Down syndrome, and intellectual disabilities often cause children to be removed from the mainstream. Quite often, parents must become fierce advocates to make sure their children receive the services, therapy, schooling, and inclusion they need and deserve.
3. Learning Disabilities
Children with learning disabilities like dyslexia and auditory processing disorder (APD) struggle with schoolwork regardless of their intellectual abilities. They require specialized learning strategies to meet their potential and avoid self-esteem problems and behavioral difficulties. Parents of learning-challenged kids need to be persistent. Their efforts must include working with the child at home and with teachers and schools to ensure the child gets all needed help.
4. Behavioral/Emotional Issues
Children with behavior issues may not respond to traditional discipline. Diagnoses such as ADHD, fetal alcohol spectrum disorder (FASD), dysfunction of sensory integration, and Tourette’s syndrome require specialized strategies tailored to the child’s specific needs. Behavior issues can increase the risk of problems at school.
Different Benefits: Different Requirements, Same Child
It is critical that parents, guardians, and other supports for a child with special needs understand the nature of the child’s physical and/or mental health challenges and be prepared to address his or her needs differently depending upon what the child needs in order to succeed.
To be eligible for benefits under the Supplemental Security Income program (SSI), a child must be either blind or disabled. If the child is blind or deemed disabled, he or she may be eligible for benefits as early as the date of birth, as there is no minimum age requirement. The Social Security Administration (SSA) has an impairment listing manual (called the “Blue Book”) that sets out which conditions qualify as disabling. This list includes:
- Musculoskeletal problems, such as back injuries;
- Cardiovascular conditions, such as heart failure or coronary artery disease;
- Sensory and speech issues, such as vision and hearing loss;
- Respiratory illnesses, such as COPD or asthma;
- Neurological disorders, such as multiple sclerosis, cerebral palsy, Parkinson’s disease, and epilepsy;
- Mental disorders, such as depression, anxiety, schizophrenia, autism, or developmental disability;
- Immune system disorders, such as HIV/AIDS, lupus, and rheumatoid arthritis;
- Various syndromes, such as Sjögren’s syndrome and Marfan syndrome;
- Skin disorders, such as dermatitis;
- Digestive tract problems, such as liver disease or IBD;
- Kidney disease and genitourinary problems;
- Cancer; and
- Hematological disorders, such as hemolytic anemias and disorders of bone marrow failure.
State Medicaid programs define which conditions qualify individuals with disabilities for disabilities benefits programs. In many states, Medicaid definitions closely follow the definitions outlined by the SSA. However, while Medicaid is a federal program, it is administered by the states, and eligibility and qualification requirements vary from state to state. So again, it may be possible for a child with special needs to qualify for some programs but not others.
One Medicaid program that can be critical for children with special needs is the Developmental Disability Waiver (DD Waiver), also sometimes referred to as the Intellectual or Developmental Disability Waiver (I/DD Waiver). These state-specific Waiver programs generally help provide services to people in the community who would otherwise need to be in an institution, nursing home, or hospital in order to receive long-term care. The specific services and benefits provided to those who qualify for services under the Waiver program vary from state to state. In addition, the time from application and determination of eligibility to the receipt of services can vary significantly from state to state. In some states, an individual may begin receiving services shortly after being deemed eligible, whereas in other states, an individual determined eligible for services may be placed on a waiting list for as long as a decade or more before receiving services. It is important therefore, for families to explore their child’s eligibility as soon as the child is diagnosed and continue to follow up with potential eligibility for these services.
The Individuals with Disabilities Education Act (IDEA) guarantees the right to a free and appropriate public education for children with qualifying disabilities or special needs. Qualifying disabilities or special needs can include learning and/or attention issues. IDEA requires that schools help students with qualifying disabilities or special needs be prepared for further education, employment, and/or independent living. If a child’s strengths, endurance, or stamina is such that they cannot keep up with school activities, the child may qualify for “other health impaired” special education status. As addressed above, sometimes conditions that qualify a child for special education services do not also qualify the child for Social Security or Medicaid benefits.
The SSA’s impairment list is long and extensive, which allows many individuals with a qualifying condition to receive benefits. Simply having a qualifying condition and thereby being considered a child with special needs for SSI purposes does not, however, necessarily mean that the child is considered a child with special needs for education purposes and may not render the child eligible for an individualized education program (IEP).
504 Plans, ADA, No Child Left Behind
Section 504 of the Rehabilitation Act of 1973 prohibits schools from discriminating against children with disabilities and requires schools to provide accommodations for a “disabled” student. The accommodations plan is often referred to as a “504 Plan.” Students with one or more impairments that substantially limit a major life activity (often including learning and social deficits) can qualify as “disabled” and therefore be eligible for special education services and an IEP.
The Americans with Disabilities Act (ADA) requires that schools meet the needs of children with psychiatric problems, and No Child Left Behind (NCLB) requires that schools uphold achievement standards for children with disabilities. Generally, when assessing a child’s eligibility for some form of special education services, the school will review any and all conditions or diagnoses the child may have. Some of the conditions or diagnoses considered are:
1. Autism Spectrum Disorder
a. Asperger’s syndrome
2. Genetic disorders
a. Downs syndrome
b. Prader Willi
3. Cerebral palsy
4. Learning disabilities
c. Vision impairment
d. Hearing impairment
e. Speech/language impairment
5. Medical conditions
b. Developmental disorders
c. Spina bifida
d. Multiple sclerosis
e. Cystic fibrosis
f. Orthopedic impairment
g. Traumatic brain Injury
6. Intellectual disability
7. Sensory impairment
8. Anxiety disorder
a. Obsessive compulsive disorder
b. Oppositional defiant disorder
9. Other health impairment
Consider Each Kind of Benefit Separately
It is imperative to determine what needs the child has and how to obtain the most appropriate benefits. Because not all children who receive special education services are also (or will be) eligible for Social Security benefits and may not be eligible for Medicaid benefits, each program and its requirements must be reviewed and considered separately.
Some benefit programs require a diagnosis before a specified age. If the diagnosis is not made before the child turns the identified age, the child will not be eligible for the benefit regardless of the severity or the need. Parents sometimes ask whether it is really necessary to identify and diagnose all of a child’s conditions or diagnoses if the child has more than one, and the answer is often a resounding “yes.” Because the term “special needs” can mean different things in different settings or in different programs, having multiple diagnoses can not only help ensure that the child receives all appropriate governmental benefits and educational services but can also open doors to other opportunities. For example, the parents of a child with cerebral palsy who is nonverbal and uses a wheelchair may not feel it necessary to include the child’s autism diagnosis as part of the medical history if the child is eligible for special education services, Social Security benefits and Medicaid based upon the cerebral palsy diagnosis. However, what if there was a camp specifically for children with autism that the child would be eligible to attend had the child been fully diagnosed? The child should not have to miss out on the additional opportunity simply because one diagnosis was “enough” to get the basic governmental and educational benefits.
Finding the Right Specialist
In most cases, a child will need proof of the disability or condition in order to be eligible for services or programs for children with special needs. In some cases, the disability or special need may seem quite obvious when the child wears hearing aids, uses a wheelchair or canes, or is nonverbal. However, not all disabilities or conditions are visible or obvious, and some can take years of testing, evaluation, and repeated visits to specialists to uncover. Many times the family physician or pediatrician will be able to make a preliminary diagnosis, but often the child will need to see a specialist or have specific evaluations performed in order to fully develop an understanding of the extent, severity, or specific nature of the special need. This may also mean seeing several different specialists if different disabilities or conditions are suspected and may include multiple different evaluations or medical tests. Medical records are often the first choice to establish the disability or condition, but school records of testing and evaluation can also be useful for determining eligibility for different services and benefits. As such, it is important to ensure that everything reasonably possible is done to ensure that the child is able to receive every benefit to which he or she is entitled.
Whether the parents already know or just believe that their child may have special needs, finding the proper medical professional greatly enhances their ability to care and provide for the child’s needs. Finding the right specialists may prove difficult or time consuming, and they may not be located near the family’s place of residence. Some families may choose to relocate in order to be closer to their child’s healthcare providers. Each provider has a different personality and a different professional manner. Some families may prefer a provider who is nonthreatening, understanding, and able to accommodate the specifics of the child’s special needs. Larger medical practices may have more experience in expediting insurance procedures or in helping families advocate for their child. The child’s healthcare providers should be willing and able to be available to the child when notes to school and other kinds of information are needed. What is perhaps most important, however, is quality of service. Every doctor is different, and his or her knowledge of a child’s special needs may be different. Families should never hesitate to schedule a short “meet and greet” to get to know a provider first and should not be afraid to make a change if a provider is not willing or able to provide the attention that the child needs.
The Whole Child
Every person is different, every family is different, and every child with special needs is different. In defining the child with special needs, it is crucial that the child be seen as a whole person, not just as someone with a disability or special need. Children with special needs may need assistance, resources, or supports that other children would not need, but they are still individuals with their own strengths, weakness, skills, and desires. Before anything, a child with special needs should simply be defined as a child.