Exceptionality Resource File

1. Disability Name, Type, Category & Characteristics

· Name: Alopecia

· Type: Health-related disorder and a physical impairment

· Category: Characterized as “other” and an autoimmune disorder

Alopecia occurs when a person’s immune system attacks their hair follicles. This causes different levels of hair loss ranging from small quarter-size patches to the loss of hair over a person’s entire body. A person who has complete body hair loss would have no scalp hair, eyebrows, eyelashes, facial hair or pubic hair. Sometimes hair grows back then falls out again, grows back for good, or never grows back. There are different types of alopecia, but all share the common characteristic of hair loss in some form.

2. Causes & Statistical Data

The WebMD website states that doctors have not been able to learn one exact cause of alopecia, however they do think the cause is related to a person’s DNA. A person may have an alopecia gene that is triggered by hormones, stress, or poor nutrition. Doctors have also observed that a person is more likely to get alopecia if they have an underlying medical issue such as asthma, Down syndrome, or thyroid disease, to name a few.

According to the National Alopecia Areata Foundation website, alopecia occurs nationally in 6.8 million people and people of all ages, both sexes, and all ethnic groups can develop it. Furthermore, uptodate.com reports that “one child out of every 1,000 children will be diagnosed with alopecia according to people or in 0.1% of the population.” Both males and females can develop this autoimmune disorder starting in childhood and continuing through adulthood.

Nanda, Arti & Al-Fouzan, Abdulwahab & Al-Hasawi, Fowzia. (2002). Alopecia Areata in Children: A Clinical Profile. Pediatric dermatology. 19. 482-5. 10.1046/j.1525-1470.2002.00215.x.

3. Treatments & Therapies 

There is no known cure for people with alopecia, however there are treatments which include anti-inflammatory drugs or medications which can be applied to a person’s scalp to initiate hair regrowth. According to headcovers.com, “some studies have shown that rubbing Retin-A into the area of hair loss alone, or in combination with topical Minoxidil can result in moderate to good hair growth in individuals with alopecia”.  “Apart from medications, head coverings like wigs, hats, and scarves will cover a person’s hair loss and protect a person’s head from sun and cold” ( https://www.webmd.com/skin-problems-and-treatments/guide/alopecia-areata#3). Also finding ways to maintain hormonal balances, reduce stressors, and focus on overall health may help to lessen the symptoms of alopecia. Although alopecia is not a serious medical condition, it can lead to emotional challenges which a person might address through counseling and support groups.

4. Implications on a Child’s Development and Learning 

Alopecia mostly affects a child’s self-esteem and social-emotional development. Other children and adults may stare, make fun of, or ignore a child who has bald spots or no hair at all. Sometimes children who have this autoimmune disorder are asked “Do you have cancer?” since their hairless appearance resembles that of a person who has had chemotherapy treatment. Social situations may be uncomfortable for a child with alopecia, or they may avoid them altogether. According to Jade Pinkett Smith’s Red Table Talk from June 2022, “some children have even committed suicide after being continually bullied by others who do not understand Alopecia”. A child who has alopecia may feel isolated and lonely while having low self-esteem. This could lead to avoidance of school or frequent absences which could cause them to fall behind in their academic subjects. They may have missing assignments and struggle to make up work that was missed on the days they were absent.

Information for table taken from https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0324-x

5. Implications on the Family Members

1. Some parents may feel responsible for their child’s disorder since it is DNA-related and the challenges they experience because of it.

2. Other parents may be overprotective of a child who has alopecia and try to “baby” them in fear of how others may treat them.

3. Parents may find it expensive and time-consuming to attend doctor’s appointments and counseling sessions for their child. This may result in parents missing work and income which can lead to financial concerns.

4. Siblings may be embarrassed or protective of a sibling who has alopecia. They may also be more accepting of others’ differences based on their experience of having a sibling who has alopecia.

Destigmatizing Alopecia in Kids (3-minute video)

https://youtu.be/6MpQIvZLus8

5. Applying Parts (Amendments B and C) of Individuals with Disabilities Act (IDEA) and the Rehabilitation Act of 1973. 

According to the National Institutes of Health website “the onset of alopecia can be at any age. When it occurs in children younger than age 10, it tends to be more extensive and progressive” (National Institute of Mental Health [NIMH], 2022). The age of a child when diagnosed determines which piece of special education legislation will be used to meet their needs. A 504 Plan, which is part of the Rehabilitation Act of 1973, applies to children between the ages of 6 and 21. Because of this, a child who is younger than 6 years of age and has been diagnosed with alopecia, will be covered under one of the parts of IDEA. For a child from birth up to 3 years, Part C of IDEA would provide services to meet their needs. Once the child turns 3 years of age, a move from Part C to Part B of IDEA would be used since it provides services for children 3 years up to six years. If no other disabilities are identified at the age of six, then a child’s services would be delivered through a 504 Plan. “If a child qualifies under Section 504, he or she may receive services or accommodations in the general classroom that can enable the child to be successful in school” (naaf.org, 2022). It should be noted that not all children who have alopecia seek out special education services of any kind.

If a child who has alopecia moves from early intervention services Part C to Part B of IDEA, and then to a 504 Plan, then specific transitions plans are put into place. According to Allen and Cowdery, several steps in the transition process are critical to ensuring success (Allen & Cowdery, 2015). Defining roles for the sending program and the receiving program of transitions can provide support for the child with alopecia and their family. The sending program can provide guidance and ease anxiety for families as they move from one program to the next. The sending program can also educate the teachers and staff of the receiving program on the strengths and needs of the child with alopecia and recommend any in-service training for them. “The receiving program should learn effective strategies used in the previous program and plan to work with the child’s family to develop a system for ongoing feedback and communication (Allen & Cowdery, 2015).”

6. Applying

Developmental

Plans (IFSP, IEP,

and 504 Plan).

There are three specific developmental plans that help ensure special education services are received throughout a child’s preschool and school years.

An Individualized Family Support Plan (IFSP) provides a family-centered approach for children with alopecia from birth up to 3 years of age. Its goal is to enable and empower the family to assist the team in meeting the child’s needs through recognizing the families’ priorities and concerns. It also includes descriptions of the child’s strengths, present levels of development, and outcome statements that include “mom and dad” as a responsible party for meeting goals.

In contrast, a child who has an Individualized Education Program (IEP) will encounter a child-centered approach which does not specifically focus on family concerns and priorities like an IFSP. However, an IEP does include the child’s present developmental levels as they relate to academic achievement, measurable annual goals, and short-term objectives. In addition, modifications, and accommodations for a child with a disability are included.

A 504 Plan is different from an IFSP or and an IEP, but it does protect the rights of school age students with alopecia between the ages 6 and 21. A 504 team will review the student’s educational file and diagnosis, meet with the parents, and observe the student in a classroom setting. If a student already has an alopecia diagnosis, then “no further evaluation is needed” to determine appropriate accommodations to be provided by teachers and other staff in the school (Shields Firm, 2022).

All three developmental plans establish a team who works together to meet the needs of the child, and family in the case of an IFSP. Participants in the team typically consist of a service coordinator, administrator(s), teachers, specialists, a nurse, and a counselor. They work together to create a developmental or educational plan, and accommodations for a child who has alopecia.

Services and accommodations for a child who has alopecia might include educating teachers, staff members, and students about alopecia, sessions with the school counselor for self-esteem concerns, and permission to wear a hat in the school setting.

7. Academic Considerations 

“The onset of alopecia can be at any age; however, most children are diagnosed with alopecia at 10 years or older” (National Institute of Mental Health [NIMH], 2022). A school age child who has been diagnosed with alopecia can request a 504 Plan. The child’s diagnosis will be reviewed by the 504 team, followed by decisions about if any assessment should be given to the child. Developmental assessments such as criterion-referenced types can be used to determine what strengths and weaknesses a child may have in their overall development. In addition, mental health screenings can be given by the school counselor to assess the child’s social emotional well-being.

A 504 plan does not include goals, but instead provides accommodations for a child with alopecia. Specific accommodations for a child with alopecia will be discussed in a later section. There are support staff in schools that can work with a child who has alopecia which could include a school counselor or nurse, and of course the child’s teacher(s).

There are support staff in schools that can work with a child who has alopecia which could include a school counselor or nurse, and of course the child’s teacher(s).

8. Accommodations 

1. The child can wear a hat at school if he or she wants to wear one.

2. The child is allowed to have a “buddy” in the class who knows and accepts them and knows that they have alopecia.

3. The teacher is educated on alopecia to be sensitive and supportive of the child.

4. The child’s classmates can be educated about alopecia through stories, letters, or guest speakers.

5. Parents of classmates can be educated through a letter or video made by the child with alopecia or their parents.

All the above accommodations were adapted from The Children’s Alopecia Project: Educational Resources. Retrieved from https://www.childrensalopeciaproject.org/, November 20, 2022.

Using an iPad to take a 5–10-minute break from the classroom demands may be one technology-related accommodation for children with alopecia. Another option related more to the treatment of alopecia, is a new app called HairComb. According to the Dermatology Times website it can track hair loss for children and adults with alopecia. A dermatologist can use this tool to follow a patient’s progression during their treatment for in-office doctor visits and Teladoc visits.

(Dermatology Times: New Technology Could Allow Us to Rethink Alopecia Scores. Retrieved from https://www.dermatologytimes.com/ , March 30, 2023.

9. Ethical Conduct Toward Students 

Principle:

P-1.3 We shall not participate in practices that discriminate against children by excluding them from programs or activities on the basis on their medical condition.

Example:

A child who has alopecia should have the opportunity to participate in all programs and activities in the classroom, as well as throughout the school. For example, if the music teacher offers auditions for parts in a school play, then a child with alopecia should be allowed to audition and considered for the part based on their abilities. If a child who has alopecia gets the part of a person who has hair, then changes can be made to accommodate the child. A music teacher who allows the child to audition and seriously considers the child for the part based on their acting abilities is upholding Principle 1.3 of NAEYC’s Code of Ethical Conduct.

If a child with alopecia is not allowed to participate in auditions for school plays since they have a medical condition, then that would be an example of an educator violating Principle 1.3 of NAEYC’s Code of Ethical Conduct.

10. Support and Services  

1. National Alopecia Areata Foundation

https://www.naaf.org/alopecia-areata/

2. Children’s Alopecia Project

https://www.childrensalopeciaproject.org/

The National Alopecia Areata Foundation offers help in managing insurance claims for prescriptions and wigs as well as free webinars for families and support groups who meet in person or online. The Children’s Alopecia Project offers free resources such as mentors and advocates for children who have alopecia and their families.

11. Mission Statements for Support and Services Organizations 

1. National Alopecia Areata Foundation

NAAF supports research to find a cure or acceptable treatment for alopecia areata, supports those with the disease, and educates the public about alopecia areata.

2. Children’s Alopecia Project

To help any child in need who is living with hair loss

due to all forms of Alopecia. We change the emphasis

from growing hair to growing confidence. building

self-esteem, providing support, and raising awareness.

– Jeff Woytovich, Founder

Both organizations advocate for the inclusion for the inclusion in society of children who have alopecia. They provide resources to educate and inform families, teachers, and the general public about this medical condition that often times is misunderstood.

12. Services Offered for the Support and Services Organizations 

1. National Alopecia Areata Foundation

· One-on-One Phone Support (Spanish and English)

· Brave Barbie (Barbie doll with alopecia for a small fee)

· Guidance with insurance reimbursement for prescriptions, wigs, and other medical expenses.

2. Children’s Alopecia Project

· Free online mini course: Alopecia 101

· Wigs free of charge

· CAP2U – donates books about alopecia to schools

By offering one-on-one phone support in more than one language, NAAF is meeting the needs of people with multiple ethnic and cultural backgrounds. Many of the services offered by NAAF and CAP allow for families with low incomes to benefit from resources and services. For example, guidance with insurance reimbursements, free informational courses, and in some cases, wigs being provided to children free of charge. The Brave Barbie encourages young children to play with toys that look like them which families would view as a way to promote positive self-image and boost self-esteem.