Repeated tragedy, where is the welfare of developmental disabilities?

● In Incheon in May 2022, person A in her 60s attempted suicide after killing a victim in her 30s with a brain lesion disorder

● May 2022 in Seoul, person B in her 40s killed a 6-year-old victim with developmental disabilities and committed suicide

● 2022 In March, Siheung, Gyeonggi Province, a 50-year-old woman attempted suicide after killing a victim in her 20s with developmental disabilities.

Today's Mabu News is going to start with a slightly heavy case.

What do the three murders listed above have in common?

First of all, the victims are all disabled.

And it's probably just that all the murderers tried extreme choices after the murder.

In fact, these three cases are the stories of mothers who murder their children with developmental disabilities.

A, B, and C, who had suffered hardships while caring for a child with developmental disabilities, attempted to make an extreme choice by killing the child themselves.

Mr. C tried to make an extreme choice, but to no avail, he reported to the police directly and reported that he had killed his child.

In Mr. C's house, a will was left saying, "I will meet good parents in my next life."

Recently, sad cases have been heard one after another in which parents directly murder their children with developmental disabilities.

I'm sure some of you, the readers, have heard about it recently.

A lot of related information also came to Mabu News feedback.

So today, Mabu News is going to look at the welfare system for people with developmental disabilities.

Mabu News analyzed the situation with data to see why the tragedy of driving the parents of people with developmental disabilities as murderers keeps repeating and what the situation is for people with developmental disabilities.

The question Mabu News asks today is this.

78.4% of people with autism need help

Developmental disability is a condition in which physical and mental development is not achieved.

Korean law regards developmental disabilities as meanings including autism and intellectual disabilities.

Let's briefly summarize what kind of inconvenience each disability has.

Intellectual disability is a disability caused by delayed intellectual development.

Intellectually disabled people refer to people who have difficulty in adapting to social life because their intellectual development is not as perfect as that of people of the same age.

Autistic disorder is characterized by difficulty in communication and repetitive behavior, but due to poor ability to adapt to society, people with autism have significant limitations in their daily life.

If so, how many people with developmental disabilities are registered in Korea?

As of 2021, the total number of registered disabled people in Korea is 2,644,700.

Compared to the total Korean population, it is 5.1%.

That's 5 out of 100.

Among them, 255,207 people with developmental disabilities.

It accounts for 9.6% of all registered disabled people.

It is noteworthy that the proportion of people with developmental disabilities is particularly high in the younger age group under the age of 29.

Of the 2.64 million registered persons with disabilities, 189,330 are under the age of 29, of which 66.4% are developmentally disabled.

15 years ago, the proportion of people with developmental disabilities among the younger age groups did not reach 50%, but now we are looking at 70%.

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In order for people with disabilities to feel uncomfortable in their daily life, various social supports must be supported.

In particular, policy support is essential because people with developmental disabilities have considerable difficulties in communicating smoothly or living independently on their own.

However, in Korea, multilateral policy support has not yet been followed.

The inconvenience and damage are borne by the disabled and their families.

The result is the tragic event I introduced earlier.

According to the 2020 survey on the disabled by the Korea Institute for Health and Social Affairs, 32.1% of all disabled people answered that they needed support.

In particular, those with developmental disabilities were nearly twice as likely to say they needed support.

A whopping 78.4% of people with autism and 62.1% of people with intellectual disabilities need help.

If you look at the people who help, in the case of the developmentally disabled, the proportion of parents is overwhelmingly high.

Of all the disabled, about 20.8% received parental help, but 66.4% of intellectually disabled and 76.3% of autistic disabled received parental help.

The average age of death with autism is 23.8 years

The life expectancy of Korea in 2020 is 83.5 years, and Korea is the fastest aging country in the world.

In Korea, where people are concerned about aging, there are people who do not.

That's a developmentally disabled person.

What is the average age of death for people with developmental disabilities, particularly those with autism?

do not be surprised.

As of 2020, the average age at death for people with autism is 23.8 years.

Among all the disabled, the average age at death is the lowest for those with developmental disabilities (intellectual disability, autism).

The average age of death for people with intellectual disabilities is 56.3 years, which is the second lowest age after autism.

This is one of the reasons for the high proportion of people with developmental disabilities in the younger age group.

The graph below shows the average age at death by type of disability.

In the case of non-disabled people, there was no data on the average age at death, so it was inevitably expressed as the life expectancy of the entire population.

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Experts say that in the case of people with autism, old age is rare due to the influence of the disorder causing the disability.

For example, a 40-year-old person with autism is equivalent to an elderly person for a non-disabled person.

Nevertheless, the average age at the time of death with autism in Korea is too low even though it is low.

A 2016 British study analyzed that the average life expectancy of people with autism in the UK was 54 years.

One of the reasons for such a low age of death in Korea is that people with autism end their lives by suicide at an early age.

When looking at the causes of death by type of disability, suicide is the only leading cause of death among all disabilities.

The suicide rate for people with disabilities is quite high.

As of 2020, 57.2 people commit suicide per 100,000 people with disabilities.

In 2016, the number was higher at 66.8, and although the number has been decreasing recently, it still shows a large gap compared to the overall suicide rate, including non-disabled people.

In 2020, the suicide rate of the entire population of South Korea is 25.7.

The suicide rate among people with disabilities is 2.2 times higher.

If we separate and compare non-disabled people, the gap will be even bigger.

Why is there such a difference?

Is the system lacking?

Countries that have shifted responsibility to families

In Korea, the Act on Persons with Developmental Disabilities was enacted in 2014.

The name of the law is <Act on the Protection and Support of the Rights of Persons with Developmental Disabilities>.

As the name suggests, this law protects the rights of persons with developmental disabilities and contains provisions to improve the quality of life of guardians who help people with developmental disabilities.

However, people with developmental disabilities and their carers point out that there is still a long way to go.

There are laws, but policies and systems that can actually be used by people with developmental disabilities are not in place.

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The core of welfare for people with developmental disabilities is a support program that helps them to adjust well in their daily life.

But using this service is as difficult as picking a star in the sky.

Looking at the results of the survey on the disabled in 2020, only 6.5% of people with intellectual disabilities and 12.5% ​​of people with autism answered that they had experience using this service.

If the service is insufficient, the damage will be borne by the caregiver's family.

If the responsibilities of care are shifted to the family and the state continues to let go, the unfortunate tragedy will inevitably continue.

The situation is already so difficult, but the situation has only gotten worse with the outbreak of COVID-19.

According to the data surveyed by the National Human Rights Commission of Korea, 20.5% of the respondents said that one parent quit their job to care for children with developmental disabilities.

Women and mothers were the overwhelming majority at 78.8% who quit their jobs.

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How much do you think the expenditure on welfare for the disabled will be in Korea's GDP?

As of 2017, it is only 0.60%.

Welfare expenditure for the disabled in Korea is much lower than that of Europe and Japan.

Among OECD member countries, there are only four countries below Korea: Turkey (0.48%), Colombia (0.08%), Costa Rica (0.06%), and Mexico (0.05%).

The average of OECD member countries is 2.02%, which is more than three times that of Korea.

Organizations with disabilities are constantly raising their voices to break this vicious cycle that only places responsibility on people with developmental disabilities and their caregivers.

Is it that effort?

At the end of May, the amendment bill to the <Act on Guarantee and Support for the Rights of Persons with Developmental Disabilities> was passed in the plenary session of the National Assembly.

The purpose was to increase support for people with the most severe developmental disabilities who need more care and to take more responsibility for the state.

The intention is positive, but there are still many gaps.

It is a situation in which only a legal basis has been established, and no specific support system has been set yet.

There is still no consensus on what kind of disability the 'severe developmental disability' is.

Policy in which people with developmental disabilities are the main actors

Rosemary Kennedy, the sister of the 35th President of the United States, John F. Kennedy, was born with an intellectual disability.

Was she judging that she did not live up to the name of the Kennedy family, a prominent political figure?

Rosemary was well adapted to her daily life enough to exercise with others, but her family hid her disability from her Rosemary's wishes, regardless of her wishes.

Her father, Joseph P. Kennedy, had her daughter have her frontal lobe removed when her daughter became an adult.

He even tinkered with unproven surgery to get rid of her disability.

Unfortunately, her brain surgery failed, and Rose Mary Kennedy spent the rest of her life in the hospital.

Perhaps because of her emotional debt to Rosemary, Kennedy's brothers and sisters showed a steady interest in her developmental disabilities.

President Kennedy set up a special committee to discuss issues with developmental disabilities and ordered a fact-finding investigation and policy development.

As a result, the <Developmental Disability Support and Bill of Rights Act> was enacted in the United States.

This is 1975.

In Korea, 39 years later, in 2014, the first law related to developmental disabilities was enacted.

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Welfare Developed countries already have a system for various developmentally disabled people.

The key is that it is made by the needs of the disabled, and that the disabled have an identity.

In developed countries such as the United States, Canada, and Europe, policies and movements for deinstitutionalization that allow both non-disabled and disabled people to blend into society, rather than a policy to separate and isolate the disabled in facilities, are already in place.

If you look at the picture above, you are using the policies corresponding to Nos. 4 and 5.

However, Korea still lacks a policy centered on the disabled.

In Korea, rather than a policy centered on people with disabilities, it is a structure in which non-disabled people must create facilities for the disabled and the disabled must enter.

If you look at the figure, policies 2 and 3 are the main ones.

Of course, some groups for the protection of people with developmental disabilities are opposing the policy of deinstitutionalization.

The concern is that if only deinstitutionalization is emphasized, it may create a situation where even people with developmental disabilities who are unable to become independent on their own will be forced to leave the facility.

i will decide

There are only a handful of disabled children who have not heard the saying, 'You die and I will die'.

My mother said the same thing to me when I was in middle school.

Then she told her mother, 'My life is mine, and I will decide the end.'

A colleague who died silently must have felt the same way.

This is the story of Rep. Kim Ye-ji, a member of the People's Power, who visited the memorial incense place for the developmentally disabled, gave a wreath and shared with organizations with developmental disabilities.

It is unfortunate in our country where parents have no choice but to tell their children with disabilities, 'You die, I will die.' I did.

I would like to see the state and society take action so that this tragedy can disappear as soon as possible.

The Mabu News prepared for today ends here.

As I was preparing the letter, the fortunate thing was that basic statistics and fact-finding surveys that could be helpful for care policies for people with developmental disabilities had been steadily conducted.

We are listening to the voices of people with developmental disabilities through various channels, so if active action continues at the national level, we may be able to break the vicious cycle.

Let us know what you think in the comments below, reading Mabu News today!

Thank you for reading this long post today. (*This article is an edited article from the Newsletter.

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: Hye-min Ahn

: Jun -seok Ahn

: Su-min Kang, Dong-yong Kang