Research of Independent Living-Supporting Service for Developmental Disabilities in Era of Convergence - Focusing on supporting Developmental Disabilities in Japan

 

Hee Kyong Chong

Dept. of Social Welfare, Gwangju University, Gwangju City, S. Korea

 

ABSTRACT:

 

 

 

1.    INTRODUCTION:

Solving the problems of the disabled can be regarded as a true method for social integration, and institutional implementation of social responsibility can be seen to be made in the form of law¹. In this sense, "Developmental Disabilities Act" of Korea (hereinafter "Developmental Disabilities Support Act", enforced on April 21, 2015), which was enacted in April 2014, can be seen to have implemented social responsibility systematically for developmental disabilities and their families.

 

there was a lot of noise due to budgetary problems from the beginning of implementation, Developmental Disabilities Support Act is considered to be significant in that advocacy and self-determination right of developmental disabilities were protected in the social system and the problem of developmental disability is regarded as be the responsibility of the entire society, not the problem of the family and the social contribution of the cost is premised². Regardless of the type of disability, families with disabilities, especially parents of the disabled, experience difficulties in terms of emotional support and information acquisition in the process of adapting to their child's disability^3,4.

 

 

In fact, according to the national survey on persons with disabilities in Korea in 2011, only about 10.2% of all developmental disabilities were able to do all the daily activities alone. Of many adult developmental disabilities, 78.4% of intellectual disabilities answered that they need a little support from others in basic daily life, and 99.5% in the case of people with autistic disorder. In addition, 78.3% were found to be jobless because they could work. Therefore, support for developmental disabilities in Korea is mainly performed by parents, and especially, the physical, psychological, psychological, and economic burdens of parents of developmental disabilities can be seen to be much greater than those of other disabilities², and this phenomenon is becoming more and more serious compared to the time of facilities^5,6. Therefore, the Developmental Disabilities Support Act can be seen to be linked to support for supporters or volunteers who actually support developmental disabilities. Unlike Korea, on the other hand, Japan has had 'welfare act for persons with Intellectual disability' of and 'Developmental Disabilities Support Act' of a declarative meaning for more than 10 years and services are being implemented specifically through the Services and Supports for Persons with Disabilities Act. In particular, support for persons with autism has been made in earnest since the implementation of the 'Developmental Disabilities Support Act' in 2005. Developmental disabilities, who have been in the blind spot for many years, have been supported by social welfare services in earnest through this law⁷

 

Thus, this study is to suggest the implications for Korea 's developmental disabilities support policy and practical service that have just started through the analysis of support services for developmental disabilities in Japan which has influenced Korea in the aspect of "social welfare law and service" and has developed policies in the culture of family-centeredism like Korea.

Developmental disorder means that a child is delayed or retarded from normal development after birth. Therefore, developmental disorders may include special developmental disorders such as autism disorder, developmental speech disorder and learning disorder⁸.

 

The concept of developmental disorder was first mentioned in the 1976 Developmental Disabilities Assistance and Bill of Rights Act. This law defines the developmental disorder as a neurological disorder that occurs before the age of 18 by persistent and inherent disability due to intellectual disability, cerebral palsy, epilepsy, or autism and continues to be symptomatic. In 1978, rehabilitation, comprehensive services and developmental disorder law changed the age of developmental disorder from 18 to 22 years and developmental disorder means to continue indefinitely and have functional limitations in three or more areas of self-protection, self-acceptance and expression language, learning, mobility, self-management, self-sufficiency, and economic self-sufficiency in everyday life and maintain the state continuously throughout life⁸.

 

In Korea, developmental disorder was included in a disability category along with the amendment of the Welfare Act for the Disabled on December 31, 1999. There has been a claim, however, there is a limit that the developmental disorder is represented by autism (autistic disorder such as pediatric autism) due to the wide range of developmental disorders. People started to argue that developmental disorder may be regarded as an intellectual disability, autistic disorder, emotional and behavioral disorder given that the majority of the disabled, including emotional and behavioral disabilities, registered their disabilities as intellectual disability before the developmental disorder was included in the disability category⁹. In the Developmental Disabilities Support Act enacted in 2014, the developmental disorder is defined as intellectual disability and autistic disorder. Unlike Korea, Japan does not include persons with intellectual disabilities in the definition of developmental disabilities. This is because intellectual disabilities were supported by the welfare act for persons with Intellectual disability.

 

The types of disability in Japan are classified into physical disabilities, intellectual disabilities, and mental disorders. The definition of developmental disabilities in Korea is limited to people with intellectual disabilities and persons with autism. Therefore, this study analyzes intellectual disabilities who are subject to the welfare act for mentally –handicapped persons and people with autistic disorder among developmental disabilities in Japan. The welfare act for persons with Intellectual disability was created in 1960 to promote welfare for people with intellectual disabilities. The purpose of the act is "to provide necessary protection by assisting intellectual disabilities to promote their independence and participation in socioeconomic activity, and carry out welfare of the intellectual disabilities“. At the time of enactment, the name of the act was the welfare act for mentally-handicapped persons. In April 1999, the law was amended by changing its name to welfare act for persons with intellectual disability. Under this act, people with intellectual disabilities aged 18 or older will receive a "RYOIKU CARD" (a different notebook name depending on the area) and are subject to services. The developmental disabilities in the Developmental Disabilities Support Act enacted in 2004 refer to autism, Asperger's syndrome, other extensive developmental disorders, learning disabilities, attention deficit/multivessel disorder, other types of brain dysfunctions and the symptoms are usually expressed in the younger age group and are defined by the act. They will be generally registered as intellectual disabilities under the welfare act for persons with Intellectual disability or mental disabilities under the Health and Welfare Act and receive services.

 

The purpose of this study is to analyze the support services for developmental disabilities in Japan and to make policy and practical suggestions to Korea. To achieve this goal, this study is to use the social welfare analysis framework of Gilbert and Terrell, which are mainly used in social welfare policy, to analyze developmental disabilities support services in the sectors of allocation, payment, delivery system, and financial resources. As shown in table 1 Gilbert and Terrell's analysis framework is often used for analysis because it can systematically explain social policy across a broad range of areas^10,11

 

Table 1 Framework of the Gilbert and Terrell

Discrimination	Contents
allocation	Who does the allocation?
benefit	What does the benefit?
delivery system	Which way does the delivery system?
financial resource	How does financial resource?

Framework of the Gilbert and Terrell¹²

 

Allocation means “Who will get the benefit?. The type of asset is a condition examined the most commonly for receiving benefits and in this case, the scope of survey of the asset type includes a person who is under obligation to support. Benefits are usually divided into a payment in kind and cash benefit. Therefore, spot goods and cash benefit that the salary provider receives are analyzed. A delivery system is to “which agency” and "how" will deliver services and means the delivery process. Finally, a financial resource is to examine whether the financing for benefits is public, private, or mixed. In particular, the recently initiated self-contribution may also be regarded as financial resources.^10,11

 

In order to analyze developmental disabilities support services in Japan, this study analyzed Developmental Disabilities Support Act and welfare act for persons with Intellectual disability and Services and Supports for Persons with Disabilities Act that can be called Act on Welfare and Service for the Disabled. We also collected data through literature such as developmental disability related reports and papers and homepages of the Japanese Ministry of Health, Labor and Welfare, the Autism Society of Japan, and the Japanese Intellectual Disability Association. To ensure the validity of the data, one Korean professor in Japan and one Japanese professor cross-checked and analyzed it. Afterwards, validity was verified through two field experts in Japan.

 

Allocation refers to "to whom will be services provided" and this study regards people with intellectual disability and those with autism as those receiving welfare services for the disabled like Korea. The number of people with intellectual disabilities in Japan is 547,000, of whom 419,000 are the disabled at home and 12,800 are the disabled in institutions. In addition, the number of people with intellectual disabilities aged 18 or older who are subject to the welfare act for persons with Intellectual disability is 4.1 million (Age unidentified 1,2000 people), of whom 120,000 are the disabled in institutions and 290,000 are the disabled at home (Age unidentified 1,2000 people) and four people out of 1000 people are mentally disabled¹³. This study focuses on those with intellectual disabilities at home who are supported by community services rather than the disabled in institutions. On the other hand, the number of developmental disabilities in Japan (Not including people with intellectual disabilities) is generally about 1% of the total population and the estimate “more than 6% of children require special education" recently announced by the Ministry of Education, Culture, Sports, Science and Technology of Japan can be seen not to be included in the figures to identify the number of developmental disabilities because it is a statistic for students who have not registered for disability such as learning disabilities but need special education. In addition, according to the survey by the Support center for persons with Developmental in Japan, the number of development support was found to be 9,575 people and that of employment support to be 7,827 people among a total of 58,996 people who got counseling in 2014¹⁴. Although the number of counseling cases is sorted by region and there are the results of research on the use of developmental disabilities even in the education sector, there were no reports of accurate statistics that measured entire Japan.

 

In order for Japanese people with disabilities to receive services, they must be registered as the disabled and apply for welfare services for persons with disabilities. When an intellectual disability aged 18 or older is registered as a disabled person, “RYOIKU CARD” is issued. Ryoyuk notebook is the same as the welfare card of Korea, and it is a handbook for the disabled issued by the heads of local governments to intellectual disabilities. The names vary depending on the area. For example, Tokyo Metropolis and Yokohama City have a card called "Child's Card", Saitama "Midori Card", and Aomori Prefecture and Nagoya City "Aigo Card" etc. Other areas use “RYOIKU CARD”. Children with intellectual disabilities under the age of 18 are classified as children and are subject to the Child welfare act, so they cannot be subject to the Welfare of Disabled Persons Act and those aged 65 or older are subject to the Welfare of the Aged Act, and they are also excluded from the support of the welfare act for persons with Intellectual disability.

 

People with autism who do not have intellectual disabilities are considered developmental disabilities in Japan. Even if a developmental disability wants support as an intellectual disability, intellectual disability services cannot be provided in principle if the IQ is higher than the upper limit. Therefore, in order to receive welfare services, he/she should register himself/herself as a mental disability. However, there are some municipalities in which intellectual disability can be registered by comprehensively reviewing social adaptability and diagnosis results of specialists even if IQ is higher than the upper limit. But these cases are very few.

 

Japanese welfare services for the disabled can be divided into a payment in kind and a cash benefit. That is, welfare services for the disabled under the Services and Support for Persons with Disabilities Act can be regarded as a payment in kind, and disability basic pension, allowance and medical expenses support can be regarded as cash benefits. Cash benefits include disability basic pension(non-contribution pension), disability allowance, an allowance for the seriously handicapped and disability pension (invalid pension) etc. For disability basic pension, among those who became disabled before the age of 20, annual income should not exceed 3.984 million yen (two people household) and if it exceeds the standard, only one-half is given and if annual income exceeds 5,000,000 yen, the person can not receive disability basic pension. Monthly 81,260 yen (975,125 yen a year) and monthly 65,008 yen (780,100 yen per year) are paid to 1st disability grade and 2nd grade, respectively. If the number of household people increases, the amount of income limit of 380,000 yen will be added per dependent family member¹⁵.

 

 In addition, special allowance is paid to the first and second grade disabled and allowance is 26,440 yen a month. In addition, there is a disability allowance paid by each municipality. For example, 60,000 yen per month is paid based on the Tokyo Metropolis Ordinance as Tokyo Metropolis severe mental and physical disability allowance¹⁶. In addition, each local government provides allowances and the amount varies.

 

A payment in kind includes welfare service under Services and Supports for Persons with Disabilities Act. First, the services that developmental disabilities can receive in the nursing service section include severe visiting care (including long time “mimamori”), act protection (Support to avoid dangerous outbreaks), short-term admission facilities, residence admission etc. Also, training benefits include self-reliance training, work shift support, continuing work support, and group home support and various counseling projects and various services such as adult guardian support and communication support to maintain local life are used¹⁷.

 

Of payments in kind, a severe visiting care system is the benefit which attracts the most attention in recent years and th system was limited to severely physically handicapped persons, but since 2014, it has been expanded to include severe intellectual disabilities. Indeed, although a few, there is a growing number of severe intellectual disabilities leading an independent living with personal assistants in the community using this system. In addition, educational programs to learn how to communicate with developmental disabilities are conducted through the Intellectual Disability Association or the Support center for persons with Developmental. Communication methods are considered to be import as the most basic support method for supporting developmental disabilities.

 

For support for developmental disabilities, most services are considered to be provided through the Support center for persons with Developmental in the case of autism. The Support center for persons with Developmental is a specialized agency that provides comprehensive support for developmental disabilities and is operated by social welfare corporation or a nonprofit corporation designated by the governor of the prefectural road. It is working with relevant organizations on health, medical care, welfare, education, labor so that developmental disabilities can live in this community and responding to and supporting counseling of developmental disabilities and their family while building a support network to support the local life. The Support center for persons with Developmental is currently establishing support systems for developmental disabilities at 88 sites as of 2016 pursuant to Article 14 ~ 19 of Chapter 3 Support center for persons with Developmental of the Developmental Disabilities Support Act. Current project contents include "Counseling project, development support, work support, supply development and awareness improvement education" and all services required for developmental disabilities to live in this area are provided¹⁴.

 

On the other hand, the delivery system of welfare services for intellectual disabilities is carried out in various ways in various places. Especially in Japan, counseling project is concrete and systematic Disabled people employment and life support center are representative for this project. The dong center is located close to the daily life of the disabled, and counseling support including employment, and health, welfare, education, employment, and life is provided in 327 places nationwide. Also, regarding the employment of intellectual disabilities who are already employed, there is a local job center for the disabled and it is giving advice for job assessment, job guidance, job preparation training, job adaptation support, and employment management for employers. Currently, 52 sites are in operation nationwide. In addition, the daily life support project supports the use of welfare services, living expenses management, maintenance of important documents such as pension certificate for those who are anxious about judgment ability in everyday life due to their intellectual disability. The usage fee is 1,200 yen at a time, and is free for paupers. The subject of the daily life support project is the social welfare council of the prefectural road, and the project is carried out in 1,727 places throughout the country.

 

And in order to carry out this project, specialists who can support developmental disabilities are needed and the training of such specialists is mostly carried out by the Intellectual Disability Association and the Autistic Disability Association. In particular, support for developmental disabilities can be seen as a result of the fact that those with some experience in the welfare of the disabled often grow up to become specialists in the support of developmental disabilities through refresher training^18,19. In addition to this, there are batch support according to life cycle (establishment of networks among relevant organizations), parent mentor training and activity support, training to improve family responsiveness, support for social skill training promotion to support adaptability of the person concerned.

 

Financing for all services for people with disabilities in Japan selects a mix of 50% of the country, 20% of prefectural roads, 20% of towns and villages municipalities and 10% of self-contribution. This applies not only to local living services, but also to the disabled living in facilities. The amount of monthly upper limit of self-contribution is determined to four categories depending on the income.

Regardless of the amount of service used each month, no further burden is incurred. If the person is aged 18 or older, the scope of households that determine income is determined by the disabled and their spouses. At this time, if the disabled or their spouses are households receiving livelihood protection or towns and villages municipalities tax-exempt households, self-contribution is not incurred. In other words, in the case of three-person households and disability basic pension 1st grade recipients, households whose income is less than 3 million yen will be exempted from self-contribution. Also, in case of towns and villages municipalities taxation households and households with the income of about less than 6 million yen, the burden of 9,300 yen is incurred and in the case of households that do not belong to the above households and have income, a burden of 37,200 yen will be incurred¹⁷. Since most developmental disabilities are living with their parents, there is a burden on self-contribution for using the services. Since the person who is under obligation to support is a parent in duty to support, there is still a burden on the self - contribution of developmental disabilities because self – contribution is determined based on the income of parents living together.

 

The purpose of this study is to suggest implications for Korea through the analysis of Japan 's developmental disabilities support service. The analysis results showed that the direction of Japan's developmental disabilities support services focuses on "areas not facilities". This phenomenon can be regarded as a result of steady practice of the government and the field after the "basic reform of social welfare" of the Japanese government implemented since the early 2000s. It can be also seen that as the local independent living of the physically disabled becomes established, the attention is directed toward developmental disabilities.

 

We also analyzed the welfare services that can be used by Japanese intellectual disabilities and autistic disabilities corresponding to developmental disabilities of Korea and are to clarify the implications for Korea based on the conclusion of the analysis.

 

The first is the allocation part that can receive the service. Japan's intellectual disabilities are limited to those who are between the ages of 18 and 65 and who have "RYOIKU CARD" after completing the registration as the disabled. However, services are provided to developmental disabilities receiving services under the Developmental Disabilities Support Act, that is, persons with autism in all ages. Developmental disabilities in Japan who do not have intellectual disabilities in terms of the disabled policy can be regarded as mental disabilities with a mental health welfare handbook.

 

The second is the service content, that is, benefit part. Cash benefits include disability basic pension and special disability allowance that a person can receive only if he/she is disabled before age 18, disability allowance paid by the head of local government and disability pension that a person can receive when he/she becomes disabled after joining invalid pension (national pension). Payments in kind are diverse such as nursing care benefit and work benefit, which are welfare services for the disabled under the Services and Supports for Persons with Disabilities Act. Particularly, the counseling part can be regarded as a close-contact service to see exactly what the disabled need in the nearest area of the disabled and support the service according to individual characteristics. The third is the delivery system part. The delivery system means that the service is provided to the disabled quickly and accurately through the support organization. Through Support center for persons with Developmental (88 centers nationwide) under the Developmental Disabilities Support Act, "Counseling project, development support, work support, supply development and awareness improvement education" are carried out to support developmental disabilities. On the other hand, job, employment and everyday life are supported for intellectual disabilities through Japan Intellectual Disability Association, social welfare councils nationwide.

 

The last is the financial part. The financial resource selects a mix of 50% of the country, 20% of prefectural roads, 20% of towns and villages municipalities and 10% of self-contribution. Many developmental disabilities live with their parents and self – contribution is determined based on the income of parents, that is, the person who is under obligation to support, so the burden on self-contribution can be seen to be considerably high.

 

The above analysis suggests the following about the support of developmental disabilities in Korea.

 

First, the standards of the support system for the disabled activities should be changed from the medical centered focusing on the physically disabled to social activities-centered. Currently, most of the services that developmental disabilities in Korea can receive are activity support services. However, a rating certificate for receiving activity support services is disadvantageous for developmental disabilities because it is medical centered (social model) rather than social activity centered (social model). Therefore, a rating certificate focusing on the physically disabled should be changed to social model centered rather than medical model centered. In Japan, there is a case that the "mimamori" allowed in the "severe visiting care system", which was available only to physical disabilities, has expanded to developmental disabilities from 2014, and severe developmental disabilities are practicing independent living. The disabled live independently in the area with personal assistants who are professional support persons while receiving activity assistance for 24 hours a day. Although very few, the number of such developmental disabilities can be seen to be increasing.

 

Second, a variety of communication support methods should be developed to ensure the self-determination right of developmental disabilities. Recently, communication support for developmental disabilities has received great attention in Korea. In Japan, the places of education are being expanded so that those who have supported developmental disabilities can receive an education through communication education etc. In some places, such as the Intellectual Disability Association of Japan and the Center for persons with Developmental, they have continuously provided education for communication support. Also in Korea, many alternative communication programs such as ACC that can be easily downloaded from mobile phones should be developed so that many developmental disabilities can take advantage of communication methods appropriate for them and the paths should be diversified so that non-disabled people also can understand developmental disabilities and learn communication methods through awareness improvement education on developmental disabilities. Currently there is a public guardian system for developmental disabilities not in Japan, ensuring the self-determination right of developmental disabilities. It can be highly evaluated in that the self-determination right is supported in the social activities of developmental disabilities by enabling daily life support without limiting the role of public custodians to legal aid.

 

Third, it is necessary to cultivate professional manpower who can understand developmental disabilities. Currently in Korea, there is a lack of professional training and programs to support developmental disabilities and there is also a lack of professional manpower. Therefore, training of professional manpower is urgently needed for a while. Hands-on workers, who should make individual support plans based on lifelong planning, should conduct from general counseling to in-depth counseling of developmental disabilities through community resource links, information provision and understanding of family and surroundings as well as developmental disabilities and therefore, the professionalism of hands-on workers can be seen to be more demanding. Although there are some differences depending on each region, Japan places experts from various fields such as clinical psychologists, speech therapists, doctors, mental health workers as well as social workers. Expert training is carried out through the professional training project and sponsored by local support centers for persons with developmental and the training education program varies according to each municipality. In Okada Prefecture, there is a three-year training education.

 

Fourth, self-contribution and the upper limit to be paid when using the service should be abolished. In many cases, developmental disabilities live with their parents and parents do not have a certain income, so there are not many benefits for self-contribution or many of them cannot receive them. Most developmental disabilities are not permanent workers. Compared to the non-disabled, additional costs are incurred due to disability. Considering these realities, the maximum amount of self-contribution should be abolished. It is also considered necessary to amend the law to abolish duty to support or to limit the obligation of support to the person concerned.

 

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7.      Takimura Masato, “Values and Problems of People with Developmental Disabilities Support Act [in Japanese]”, Japanese journal for the problems of the handicapped, 2008, 36(1), pp.35-40 http://ci.nii.ac.jp/naid/110006630206

8.      M. S. Kim. “Disabled Welfare”. hakhyeonsa, 2006

9.      D. Y. Kim, “A Study on Permanency Planning of Parents for Children with Developmental Disabilities”, The Journal of Special Education : Theory and Practice. 2015, Vol. 16, No. 2, pp.121-147

10.   Y. H. Sin, “An Analysis of the US prisoner child support policies: Gilbert and Terrell Application of the policy framework-Calibration discourse-”. Asian Forum calibration, 2013, Vol. 7, No. 2, pp. 225-256

11.   S. H. Cho, “The comparative study on LTC insurance in Korea, Germany and Japan”, Chung-Anag University master's thesis, 2014.

12.   H. K. Chong ＆ S. M. Heo, "A Comparative Study on the ALS Support System between Korean and Japan". Korean Council of Physical, Multiple & Health Disabilities, 2015, Vol.58, No.2-4, pp.229~252

13.   Cabinet office, Government of Japan：http://www8.cao.go.jp/ shougai/whitepaper/h25hakusho/zenbun/pdf/h1_01_01_01.pdf(2017.2.20.)

14.   Information and Support Center for Persons with Development at Disorders:http://www.rehab.go.jp/ddis/(2017.3.3.)

15.   Japan Pension Service, 「Disability basic pension」: http://www.nenkin.go.jp/service/jukyu/shougainenkin/jukyu-yoken/20150514.html. (2016.3.15.)

16.   Tokyo severe mental and physical disability benefits Article : http://www.reiki.metro.tokyo.jp/reiki_honbun/ag10107761.html/(2017.3.3.)

17.   Ministry of Health, Labour and Welfare ，Disability welfare services : http://www.mhlw.go.jp/bunya/shougaihoken/service/taikei.html(2017.3.2.)

18.   Autism Society Japan : http://www.autism.or.jp/(2017.3.8.)

19.   Japanese Association on Intellectual Disability : http://www. aigo.or.jp/ (2017.2.24.)

 

 

 

 

 

 

Received on 02.08.2018           Modified on 11.12.2018

Accepted on 11.01.2019         © RJPT All right reserved