A review of compensation in order to respond to the ageing of group home users and the increasing severity of their disabilities – the nature of support for people with severe behavioral disorders, or those who need medical care

Shigeyasu Ito
Group Home Office, Satsuki Welfare Group

1. Group homes as places to live

In the 1980s, as the collaborative workshop movement grew across the country, places for people with disabilities who had graduated from schools for the handicapped (now special needs schools) to work in their local communities became more widespread. The next wish of the families who had pushed for the creation of these workshops was the realization of places where their children could live in peace of mind after they themselves had died.

At that time, if their families became unable to care for them, people with disabilities who could not live alone had to choose “residential facilities”. However, it was very hard to get into such facilities, and many families were anxious about their children’s futures.

Then at last, in 1989, group homes (now “group homes with aid”) began as a national system. Many people had high expectations of these homes as a new living option, and with more than 140,000 users at present, surpassing the numbers in residential facilities, group homes play an important role in supporting community life.

Clause 19 of the Convention on the Rights of People with Disabilities has the guarantee of their right to live on an equal basis with the general population as a major premise, referring to “living independently and being included in the community”, and the right “to choose their

place of residence and where and with whom they live on an equal basis with

others”. We have not yet reached the point where most people with disabilities “decide their own way of living for themselves”, but I believe that there is high acclaim for the 32-year history of the long and hard struggle of group homes to become an integral part of the lives of people with disabilities and support them in leading high-quality lives. 

2. Distinctive features of the latest revision of compensation

Group homes are experiencing an increase in the number of users with severe disabilities, albeit not on the scale seen in residential facilities, and are beginning to extend their support to people with severe behavioral disorders and those who require medical care.

My corporation constructed group homes designed for users with severe disabilities a few years ago, and is supporting such users by assigning medical staff, as well as ensuring ample staffing levels. However, when it comes to the operation of these group homes for people with severe disabilities in particular, they are deeply in the red and have trouble retaining staff, to the extent that even managers are forced to work overnight shifts.

Heading the agenda for the latest revision of compensation was “Review, etc. of the compensation system in light of the ageing of people with disabilities and the increasing severity of their disabilities, in order to provide support for community transition and community life, and for high-quality consultation support”. The first item on this list was “Review of compensation in order to respond to the ageing of group home users and increasing severity of their disabilities”. The officials in charge at the Ministry of Health, Labour and Welfare also emphasized that “The ageing of group home users and increasing severity of their disabilities is absolutely the first port of call in the revision of compensation.”

 In concrete terms, the contents of the revision fall under the following five points.

1. Expansion of those eligible for additional remuneration for the support of people with severe disabilities (people with severe behavioural disorders)
2. Establishment of additional remuneration for the assignment of nurses for people requiring medical care 
3. Establishment of additional remuneration for trial usage in order to promote the acceptance of people with severe behavioural disorders
4. Review of the baseline compensation system, including for daytime service support-type operations
5. Under the review of additional remunerations for the nighttime support system, the creation of greater variation in compensation and the establishment of additional remuneration where further staff are assigned to night rounds　

* The use of home helpers on an individual basis by people with severe disabilities continues as before.

In the latest revision of compensation, three new additional remunerations were established to respond to the increasing severity of disabilities and, to create clearer differentiation in compensation amounts in order to secure financial resources, the baseline compensation for people with mild disabilities, at Support Level 3  and below, was greatly reduced, while the baseline compensation for people with severe disabilities, at Support Level 4 and above, was increased by one unit. The additional remunerations for the nighttime support system are unchanged at Support Level 4 and above, but those at Support Level 3 and below were reduced once again. Meanwhile, the new additional remuneration for the assignment of staff to night rounds is in order to ensure rest time for staff.

Overall, the revision of compensation appears to be generous to people with severe disabilities and harsh to people with mild disabilities, but if we look at the baseline compensation for the six levels, it was a disappointing result, granting one unit fewer than the 2015 revision.

Group homes are basically small-scale businesses, so I believe that it will be difficult for us to go on receiving people with severe disabilities without a significant increase in the baseline compensation. Moreover, with the latest revision of compensation, businesses with a large number of users with mild disabilities will find it even harder to operate. There are many people whom it is hard to support in practice, even if they are at a lower Support Level.

3. How to make use of compensation for ageing users with increasingly severe disabilities

In order not only to accept people with severe behavioural disorders, but also to support them in living stable lives, it is essential to improve staffing provision in terms of both quantity and quality.

It is desirable to assign a solid base of permanent staff wherever possible. Under the baseline compensation, one caretaker is assigned per three users for daytime service support-type operations, and one per four users for comprehensive care service-type operations. It is also necessary to ensure that all compensation is put to full use, and to judge whether or not the user’s Support Level is appropriate. In order to avoid a user being assigned to a low level even though their need for support is high, it is important to report the actual support situation in sufficient detail during the certification interview. Moreover, the additional remuneration for trial usage by people with severe behavioural disorders is a very good thing, but such people feel anxious the first time they use our services, so it is desirable to be able to use this in conjunction with the additional remuneration for support of people with severe disabilities.

Businesses which receive additional remuneration I or II for support of people with severe disabilities for the first time under this revision need to undertake training on behavioural disorders; since some of the organisations offering training these days are private, it is a good idea to apply or put in a request early. At my business, the number of people eligible for the additional remuneration for severe disabilities has increased, so we intend to secure more permanent staff.

In order to raise the quality of support, it is necessary to consider the support issues as an organisation, such as by creating and consulting on care plans and holding case conferences with daytime and home care providers, and to carry out training to enable staff of the group home to provide consistent support. 

Concerning support for people requiring medical care, a new additional remuneration for responding to and supporting medical care needs was established under the latest revision. However, it is 120 units per day, so unless a certain number of users eligible for this additional remuneration can be secured, it will be difficult to assign one dedicated nurse. The compensation given for the medical cooperation additional remuneration has also greatly altered depending on whether or not medical care is being given, and so if only a few users are eligible and an external medical institution is willing to cooperate, using this additional remuneration is perhaps preferable.

If it is difficult for a nurse to work overnight, it will be necessary for night shift staff or supporting helpers to provide medical care during the night, but these support staff will need training.

When it comes to the ageing of users, I feel that there were no measures to address this in the latest compensation. Past revisions of the compensation system provided support for people who remain at group homes during weekday daytimes in the form of daytime support additional remuneration I and the daytime service support type.

When people age, their physical condition of even previously healthy people declines, and they visit the doctor or are hospitalized more often for respiratory and lifestyle diseases. I believe that the state of health of most people with disabilities is that which would be expected in someone around 20 years older. The current additional remuneration for special support with hospitalization does not match the actual situation, there is no change in the number of staff, and measures are needed to address the significant reduction in compensation (reductions of 90% are by no means rare).

4. Towards a future model for group homes

Supporting ageing users with increasingly severe disabilities was a theme of the FY 2021 revision of compensation, but it has left many problems when we try to make this support a reality.

Survey results show that more than 80% of group home users hope to continue making use of these facilities. They are growing older day by day. Usage by people with severe disabilities will also continue to increase going forward.

Group homes are small-scale groups of people living together. They provide continuous support, including at night and on holidays. They enable each person to live freely in the community. They safeguard people’s lives and support them in their daily living. However, in order for people with severe disabilities to be able to go on using these group homes in peace of mind, it is necessary to assign several permanent staff, just as in residential facilities, and carry out training repeatedly in order to build up a solid base of expertise and raise the quality of service provided.

In addition to securing stable baseline compensation, we need to add much more compensation specifically addressing the ageing and increasingly severe disabilities of users. In order to assure a broad range of support, we also need to further expand the use of helpers.

Assigning nurses and training staff in sputum suction and other topics are necessary in order to enhance the provision of medical care, but deeper collaboration with local home-visit nursing care and medical care providers is also needed.

Further action is still needed to build an ample group home system which anyone can use as a matter of course, however severe their disabilities, and which allows anyone to feel secure living in the community.

Satsuki Welfare Group’s Minnanoki community life support hub facility. 20 people live in three group homes designed for those with severe disabilities.