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Providing funds for the care of children with special needs

Thesis: Funding should be provided for families with special needs individuals because the

medical expenses can lead to financial instability, their parents are under an immense amount of

financial stress, and low funds cause disabled children to be unleveled in education and societal

standards.

I. Medical expenses for children with special needs can lead to involuntary financial

instability.

A. An average annual cost of $5,243 is spent on caring for a child with a disability

(Anderson, Serge, et al).

1. A study was conducted by Autism Speaks and they found that ​an annual

of $3,020 is spent on medical costs a year for autism. They also set the

cost of autism, finding that in a lifetime the cost per individual is

approximately $1.4 million ​(Anderson, Serge, et al).

2. An anecdote from a father with a son that has autism states that he pays

$9,000 of out of pocket expenses. Along with an additional $1,800 he has

to pay for diapers for the 5 year-old. He also claims to pay $24,000 for a

caregiver for his son. That is a grand total of $34,000 out of pocket

expenses that this family is paying to provide for their disabled child

(Howe).

B. ​A recent national U.S. study reported that 40% of families of children with

special
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health care needs experience a financial burden due to their child's condition

(Anderson, Serge, et al).

1. An abundant amount of time off is necessary for the parents, leading to a

lower income. “Studies have shown that the severity of the disability has

an impact on the resources and cost of care.”

2. With 19% of all Americans being classified with a disability, that’s

approximately 1.6 million people.

3. 1 in 50 children are also diagnosed with autism. A little under half of

those families will experience a financial burden due to their family

member. (Howe) (Used in Introduction)

4. “People in poverty are less likely to receive adequate health care or to be

able to pay for basic medicines. Therefore are much more susceptible to

disease and infections causing a disabled child.”

5. “Fully 40% of families with CSHCN, or 3,746,000 families nation-wide,

experience financial burden related to their child’s condition”​ (“Costs of

Autism”).

II. Parents of a child with special needs are already under an immense amount of stress and

shouldn’t have to worry about money.

A. Parents who are caring for children with a mental illness have found it to be

extremely difficult to get their own mental health needs met while continuing to

meet the mental health needs of their child.

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1. The severity of the loved ones disability impacts the cost and quality of

care that can be provided (“Children with Disabilities”).

2. The costs of caring for a child with a disability create further hardship for

a family, particularly for mothers who are often prevented from working

and contributing to family income.

3. Research was conducted by Elgar and colleagues finding that being the

mother of a child with mental illness is associated with high levels of

distress and depression. In addition, Barkley and colleagues found that

mothers of children with mental illness were two to three times more

likely to be depressed than mothers of healthy children (Meyers).

4. As well as dealing with traditional parenting responsibilities, parents of

chronically ill children deal with special needs such as doctor or therapy

appointments, medical treatments, hospitalizations and school issues that

can be overwhelmed.

5. Johnston and Mash conducted research and concluded that the presence of

a child with ADHD results in increased problems with family and marital

functioning (Meyers).

6. “Children receiving inadequate affection may manifest stunted physical

growth despite receiving adequate nutrition.” and “Developing proper

levels of attachment with a trustworthy caregiver is essential to the present

and future mental health of a child” (Quick),

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B. Parents of children with autism experience more stress and are more likely to have

negative outcomes than parents of children with other disabilities.

1. Research examined depression, social isolation, and spousal relationship

problems among parents of children with autism. 58 parents completed

surveys. Results indicated that several coping styles corresponded to

negative outcomes (“Researchers find what stresses parents”).

2. In a study of 54 families with autistic toddlers, parents reported elevated

stress levels (“Children with disabilities”).

3. Mothers of both autistic and Down syndrome children reported more

disrupted planning, caretaker burden, family burden, and frequent use of

self-blame as a coping strategy than did mothers of developmentally

normal children (Rodrigue, Morgan, et al).

III. Low funds cause disabled children to not have the same privileges as

developmentally normal children.

A. Education is an essential component in the development of a special needs child.

1. Children develop a positive understanding of themselves and others in

classrooms (“The Benefits of Inclusive Education”).

2. “In inclusive classrooms, children with and without disabilities are

expected to learn to read, write and do math. With higher expectations and

good instruction children with disabilities learn academic skills” (“The

Benefits of Inclusive Education”).

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3. In 2013-14 school year, the government proved $11.5 million for special

needs education through the Individuals with Disabilities Act (Litvinov).

4. Congress committed to paying 40% of the average cost to educate a child

with disabilities, they have never met even half of that commitment.

Currently, the federal share of funding for special education services to

around 6.9 million students which is about 16 percent (Litvinov).

B. Poverty is a cause and consequence of mental health.

1. Poverty can lead to job loss and reduced earnings, barriers to education

and skills development, significant additional expenses, and many other

challenges that can lead to economic hardship (Vallas, Fremstad).

2. Poverty can limit access to health care and preventive services, and

increase the likelihood that a person lives and works in an environment

that may adversely affect health (Vallas, Fremstad).

3. A significant proportion of children with disabilities are denied access to

basic services including education and health care due to low wealth of

their families (“Online Appointments”).

4. “The lack of basic healthcare helps to account for mortality for children

with disabilities being as high as 80% in countries where under-five

mortality overall has decreased to below 20%” (“Online Appointments”).

5. 16% of low-income families have a child with a disability; 9% have a

child with a severe disability. This is nearly 50% higher than the rate of

higher-income families. The percentage is particularly high among welfare

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families-- 20% of these families have a child with a disability, including

13% where a child has a severe disability (“Children with Disabilities”).

IV. Insurance policies and grants in place that parents can receive to provide

sufficiently for their child.

A. There are plenty of insurance policies available to parents to apply for to relieve

some of the stress of debt that they are feeling (Isenhour).

1. Social Security Child Disability Benefit (CDB)/Disabled Adult Child

(DAC) Benefit

2. Social Security Disability Insurance (​SSDI)

3. Medicaid

B. Families can also apply for grants to help alleviate financial instability

1. Autism Speaks

2. Make-A-Wish

3. Action for Autism

C. Families with a disabled individual have to constantly look after them and provide

for their needs, they don’t have time to apply for grants or insurance (Reply)

1. They may not be chosen receive the insurance or grant money that they

apply for.

2. Parents pay margin may be too high meaning they are not available

applicants for policies and grants

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Carlea Thomas

AP English IV

Mr. Cullen

April 27, 2018

Providing Funds for the Care of Children with Special Needs

“It's expensive to raise a child with special needs, which people don't even think about.

Emotionally it can be a struggle, but financially it's really rough” said Elena Delle Donne.

People do not realize how expensive and challenging it is to raise a child with mental disabilities.

“One in fifty children are diagnosed with autism. A little under half of those families will

experience a financial burden due to their family member” (Howe). Stress is also added to their

families lives. Parents of a child with special needs are already under an immense amount of

stress and shouldn’t have to worry about money. Low funds cause disabled children to not have

the same privileges as developmentally normal children. In regards to this topic, funding should

be provided for families with special needs individuals because the medical expenses can lead to

financial instability, their parents and families are under an immense amount of financial and

mental stress, and low funds cause disabled children to be unleveled in education and societal

standards.

With the plethora of expenses placed upon the families with special needs children. It is

easy for them to slip into financial instability. Researchers have said that it costs approximately

$5,243 annually when caring for an individual with special needs, this is for medical expenses

alone (Anderson, Serge, et al). For an illustration, a father of a son with Autism opened up about

his spending and claimed ​he pays $9,000 of out of pocket expenses. Along with an additional
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$1,800 he has to pay for diapers for the five year-old. He also claims to pay $24,000 for a

caregiver for his son. That is a grand total of $34,000 out of pocket expenses that this family is

paying to provide for their disabled child (Howe).​ That is entirely too much for a parent to

provide to be able to give their child sufficiently met needs. “A recent national U.S. study

reported that forty percent of families of children with special health care needs experience a

financial burden due to their child's condition” (Anderson, Serge, et al). Since an abundant

amount of time is required to care for these children, parents are almost forced to take off work

causing a lesser income. An affluence of money is required to provide for a child with special

needs, even if they have a minor disability. Speaking about this subject, Autism Speaks, (an

organization that connects people with autism, families, and caregivers tool and resources about

autism), conducted research that “...​set the national costs of autism at around $137 billion

annually. This translates into an average lifetime cost of $1.4 million for a person affected by

autism that is not complicated by intellectual disability. An estimated one in five persons with

autism also has an intellectual disability. This increases the average lifetime cost of care to $2.3

million” (“Costs of Autism”). These are unsettling numbers for a family to hear which can cause

them to be placed under a lot of stress.

Although, there are such insurance policies and grants in place that parents can receive to

provide sufficiently for their child. Benefits to the individual as result of a disability are as

follows: Social Security Child Disability Benefit (CDB)/Disabled Adult Child (DAC) Benefit,

where Individuals who are age eighteen or older and qualify for disabilities before turning 22

may receive benefits based on a parent’s Social Security record if the parent is currently

receiving retirement, disability benefits, or is deceased. The adult or child must be unmarried
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unless their spouse is a Social Security beneficiary. When receiving Social Security Disability

Insurance (​SSDI)​, this is an insurance program, which provides monthly cash payments to

individuals who are unable to work at a substantial level because of a qualifying disability that is

expected to last for at least a year or result in death. Benefits are based on prior contributions and

employment history and qualification is unaffected by income or asset levels. Eligibility is

delayed five months from the onset of a disability. Medicaid is also offered to families with a

disabled family member, it is health insurance that in most states automatically comes with SSI.

Many other individuals with disabilities may receive Medicaid health benefits to pay for medical

care, durable medical equipment, long-term care, in-home caregivers and other residential

community living options. Families can also apply for grants from programs like Autism

Speaks, Make-A-Wish, and Action for Autism (Isenhour). So, families are offered a plethora of

options that can help reduce a financial burden, they just have to search for them.

However, parents of the mentally impaired are busy. They may not have the time or

resources to be able to apply for to the money. Their pay margin may also be too high when

seeking help from insurance agencies. Consequently, they still have to pay for the necessary

treatments their child needs.

Since an​ abundant amount of time off is necessary for the parents, a lower income is set

to follow. Particularly in cases where mothers are prevented from working and contributing to

family income. “Studies have shown that the severity of the disability has an impact on the

resources and cost of care.” Out of all Americans, a total of nineteen percent have been

classified with a disability (“Children with Disabilities”). That’s around 1.6 million people. “A

recent national U.S. study reported that 40% of families of children with special health care
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needs experience a financial burden due to their child's condition” (Anderson, Serge, et al). With

all of those people under financial stress because of the health care needs of their child,

government action needs to step in.

In addition to the stress of finances, ​parents who are caring for children with a mental

illness have found it to be extremely difficult to get their own mental health needs met while

continuing to meet the mental health needs of their child. A study of fifty-four families with

autistic toddlers, parents reported elevated stress level to their autistic toddler (“Children with

disabilities”). Handling these children with such a high level of needs can indeed be seen as

higher stress levels when compared to those of developmentally normal children. In 2005, a

research study was conducted by Elgar and colleagues finding that being the mother of a child

with mental illness is associated with high levels of distress and depression. In addition, that

same year a study was conducted by Barkley and colleagues, they found that mothers of children

with mental illness were two to three times more likely to be depressed than mothers of healthy

children (Meyers). As well as dealing with traditional parenting responsibilities, parents of

chronically ill children deal with special needs such as doctor or therapy appointments, medical

treatments, hospitalizations and school issues that can be overwhelming. Mothers of twenty

autistic and twenty down syndrome children reported more disrupted planning, caretaker burden,

family burden, and frequent use of self-blame as a coping strategy than did mothers of

developmentally normal children (Rodrigue, Morgan, et al). Parent’s do not have time to spend

time on their own well-being. Their needs go unmet which can lead to lack of their own mental

stability.
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Siblings of the special needs child are also affected because of their sibling. Parents will

either be at work trying to provide adequately for their children or at special appointments with

their other child. The costs of caring for a child with a disability create further hardship for a

family. The excess of attention on the child with mental impairment can result in other siblings

of the child to receive less attention. Studies on lack of attention from parental guardians were

conducted and found that “...children receiving inadequate affection may manifest stunted

physical growth despite receiving adequate nutrition.” As well as “...developing proper levels of

attachment with a trustworthy caregiver is essential to the present and future mental health of a

child” (Quick). Without the proper attention and care the mentally normal child could suffer as

result of the abundance of attention placed on his or her sibling.

The child’s parent’s marriages can also be burdened due to the financial stress of caring

for the child. With countless appointments and time needed off of work, time spent together is at

a constant hold. Johnston and Mash conducted experiments and concluded that the presence of a

child with ADHD results in increased problems with family and marital functioning (Meyers).

Lack of money can cause an abundant increase of stress placed on them, consequently causing

the two to grow further apart. The research examined increase depression, social isolation, and

spousal relationship problems among parents of children with autism, fifty-eight parents

completed surveys indicating these results (“Researchers find what stresses parents”). Parents

often are unable to cope with all of the stress they feel because of the finances and excessive

needs of their child. Their marriage should not have to suffer because of that. No one benefits

from an unhealthy home life, especially a child with a mental impairment. Children that require
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such extensive needs should be able to see a happy and healthy relationship between their

parents. They can only benefit positively from happy and stress-free parents.

Especially since low funds cause disabled children to not have the same privileges as

developmentally normal children. Mentally impaired children often go unnoticed when

philanthropists seek to help those in need and become even more marginalized as fewer

resources are available in the midst of an emergency (“Online Appointments”). Children with

disabilities and their families continually experience impediments to the enjoyment of their basic

human rights and to their incorporation into society. Their abilities are overlooked, people

underestimated what they are able to handle and their needs are given low priority. Yet, the

barriers they face are more frequently as a result of the environment which they live and lack of

sufficient medical treatment they receive as a result of their impairment (“Promoting the

Rights”). Education, for example, is an essential component in the development of a special

needs child. In inclusive classrooms, children are able to develop a positive understanding of

themselves and others. Both children with and without disabilities are expected to learn to read,

write, and do math. With higher expectations placed upon the children and good instruction

children with disabilities learn essential academic skills (“The Benefits of Inclusive Education”).

“Studies into funding have found that in the 2013-2014 school year, the government proved to

have paid 11.5 million dollars for special needs education through the Individuals with

Disabilities Act (IDEA).” That number was only half of the forty percent that Congress had

originally committed to pay for the average cost to educate a child with a mental impairment. As

of current news, the federal share of funding for special education services averages around 6.9

million students which can be calculated to only sixteen percent of the forty that they agreed to
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provide for (Litvinov). A teacher in field of the Exceptional Children department, Jennifer

Hankins, said:

It seems that opportunities for inclusion in the general education program are

declining due to an overall decrease in educational funding. Teaching positions are

being cut in all areas and this includes in the Exceptional Children's program.

Research shows that students benefit from being included in general education

classrooms with their non-disabled peers; however, with limited staff, this does not

happen as often as we would like. Teachers across the board are feeling the budget

cuts not only through the loss of positions, but also through the lack of resources.

This also affects the Exceptional Children's department. Many of our students

require adapted technology, adapted books, specialized instruction etc. just to be

able to access the curriculum. We are required by law to provide anything a child

needs to access the curriculum; however, with budget cuts, we are doing this

through very limited funding. (Hankins)

This acts as proof that the government lacks in the financial support of the schooling that these

children deserve.

Poverty can also play a major factor in the result of having a mental illness. Poverty can

lead to job loss and reduced earnings. These factors have major causes that include significant

additional expenses, barriers to education, skills development and many other challenges that can

lead to economic hardship (Vallas, Fremstad). A repercussion to these hardships can restrict the

access to health care and services developmentally for challenged children. Another

consequence of poverty is the increase of likelihood that person lives and works in an
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environment that may adversely affect health (Vallas, Fremstad). A significant fraction of

children with disabilities are denied access to fundamental services including education and

health care as a consequence of the low wealth of their families (“Online Appointments”). It is

unfair for a person to have themselves along with their present or future family suffer because of

the lack of funds that should provide the care for current or potential children with mental

disabilities. A study on the United States concluded that sixteen percent of low-income families

have a child with a disability; nine percent have a child with a severe disability. This is nearly

fifty percent higher than the rate of families with a higher-income. The percentage is particularly

high among families that obtain welfare-- twenty percent of these families have a child with a

disability, including thirteen percent where a child has a severe disability (“Children with

Disabilities”). Families being in poverty can lead to children having the disability. They should

be cared for and funding needs to be provided to those with mental impairment if they can not do

so themselves. With the lack of basic health care that contributes to mortality for children with

disabilities being as high as eighty percent in countries where children under the ages of five

mortality overall has decreased to below twenty percent. (“Online Appointments”). Mental

illness’ can lead to the death of children. The government should help to provide for those so

desperately in need of money for their basic needs of survival. Children do not deserve to suffer

for things they can not alleviate.

Funding should be provided for families with special needs individuals because the

medical expenses can lead to financial instability, their parents are under an immense amount of

financial stress, and low funds cause disabled children to be unleveled in education and societal

standards. Low funding from the government can cause a family to be under an immense
 Thomas 15

amount of financial stress. Siblings of the disabled individual can also suffer, as well as the

parent’s marriage. In an education setting, providing money can help teach special needs

children the essential components they need to know because of the higher expectations placed

upon the children and the good instruction the children learn for fundamental academic skills.

The government even agreed to fund forty percent of the money needed for education but never

met half of that commitment. In addition, poverty is a cause and consequence of a disability.

Those with a lower income can not afford the basic health care needs necessary for preventing a

child with an impairment. Poverty can also create challenges that create barriers for the

development of the person with impairment. One of the leading reasons the government was

instilled was to help those in need, families of those with a disabled individual are in need. The

government should provide funding for things such as health care, medical equipment, and any

other necessary needs for the mentally impaired. They cannot help the conditions they are in. It

should be up to the government to help them in anyway possible to relieve the stress of those

closest to them.
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Works Cited

Anderson, Donna, PhD, Serge Dumont, PhD, Philip Jacobs, PhD, and Leila Azzaria, MA. "The

Personal Costs of Caring for a Child with a Disability: A Review of the Literature."​US

National Library of Medicine​. N.p., n.d. Web. 3 Apr. 2017.

"Children with Disabilities and Other Special Needs: Opportunities to Participate in Quality

Programs Must Be Expanded." (n.d.): n. pag. Children's Defense Fund. Web. 18 May

2017.

"Costs of Autism: Study Tallies Kids' Higher Health and Education Needs." ​Autism Speaks​. N.p.,

n.d.Web. 4 Apr. 2017.

Hankins, Jennifer. Personal Interview. 27 April 2018.

Howe, Jeff. "Paying For My Special-Needs Child | Money." ​Time​. Time, 4 June 2014. Web. 06

Apr.2017.

Isenhour, Barbara A., Esq. "Government Benefits as a Foundation for Special Needs Planning."

Special Needs Alliance Government Benefits as a Foundation for Special Needs Planning

Comments​. Special Needs Alliance, n.d. Web. 14 Feb. 2017.

Litvinov, Amanda. "How Congress’ Underfunding of Special Education Shortchanges Us

All."​Education Votes​. N.p., 19 May 2015. Web. 17 May 2017.

Meyers, Seth, Psy.D. "Pity the Parents of Special Needs Children: Effects &

Coping."​Psychology Today​. N.p., n.d. Web. 17 May 2017.

"Online Appointments for Young People with Diabetes." ​Nursing Children and Young

People​28.2 (2016): 6. UNICEF, May 2013. Web. 18 May 2017.

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Promoting the Rights of Children with Disabilities​. Florence: UNICEF, 2008. UNICEF, 2008.

Web. 18 May 2017.

Quick, Mark. "A Lack of Affection in Childhood Development." ​Livestrong​. N.p., 1 July 2015.

Web.17 May 2017.

"Researchers Find What Stresses Parents with a Chronically Ill Child." ​Science Daily​. N.p., 18

Sept. 2013. Web. 17 May 2017.

Rodrigue, James R., Sam B. Morgan, and Gary Geffken. "Families of Autistic Children:

Psychological Functioning of Mothers." ​Journal of Clinical Child Psychology​. N.p., 07

June 2010. Web.8 May 2017.

"The Benefits of Inclusive Education." ​PBS Parents​. PBS, n.d. Web. 17 May 2017.

Vallas, Rebecca, and Shawn Fremstad. "Disability Is a Cause and Consequence of Poverty." ​Talk

Poverty​. N.p., 19 Sept. 2014. Web. 17 May 2017.