How should we treat and face Rett-chan＊ on a daily basis? Her expert writings and interviews with her parents are included. I hope it will be a hint for how to treat Rett-chan on a daily basis.
*Rett-chan means little Rett-Patient
Way of communication for Rett-chan
How to Communicate with Parents, Teachers, and Health Care Professionals with Children with Rett Syndrome
Understanding Rett Syndrome By Barbro LINDBERG
Japan Rett Syndrome Association Translation Department
Description of typical symptoms and behavior
Transmission of will
Despite the emotional interest and desire for social contact, their ability to engage in social contact is not “normal”.
They do not have the ability to communicate their desire for contact in a natural way. They have trouble communicating their messages and desires/wills directly, but this is often due to incompetence rather than lack of interest.
Not only that, but part of their disability is due to our messages, desires, and wills that shape the world around them. We are unaware of non-verbal signals (non-verbal signals) and are not accustomed to various analyzes and interpretations.
Although we know that children with Rett syndrome have disabilities, we often struggle to put this knowledge into practice. At mealtime, when a little girl lifts her hand and pokes at a crumb of bread, we quickly interpret it as wanting a sandwich.
If the child walks up to the bookshelf in her living room and she drops a few records on the floor, she forgets the limitations of her expression and she is a well-behaved child. We tend to treat them as if they were. We say, “No, no, don’t touch,” and put the record back on the high shelf out of her reach.
And we forget to ponder why she dropped the record. Maybe she wanted to hear some music. In fact, she does exactly the same thing at her table, and this is the limit of her expressiveness.
She can’t take the record and hand it to an adult. She cannot use language to ask for what she wants, nor can she use her voice. Later she finds out that she doesn’t touch things she’s not really interested in.
She can choose, and she chose the record the only way she could. In addition, our pace is different from theirs, making it clear that these slow-paced women are making an attempt to tell us something.
Doing so is not always successful. Moreover, we don’t always have the time to interpret their gestures one way or another.
Nor are they always ready to respond to our efforts to communicate. Maybe here we also expect them to communicate in our language, what words they use and what they are interested in under the circumstances.
It’s because you forget. As an example, a young girl is engrossed in playing with a doll. She grabs it, slams it on the floor, stares at it, listens intently.
She’s so excited, her play is complicated and she’s focused all her attention.
Despite her disability, she is now busy listening, staring, and sensing (input) as well as grabbing and slamming dolls (output), possibly making her own movements and resulting It’s like looking at the connection (coordination) with the generated sound.
And she’s talking about her in a high-pitched voice. Here her mother calls her to come. Her mother calls her name “Welcome” over and over, but nothing happens.
So the kids keep playing. Her call will surely be heard, for she is not deaf.
But the call fades away, and the girl makes no visible response to her. Her mother then decides to get her attention with her daughter’s favorite food.
Mothers try to give their children more stimulation than playing with dolls. “Come here for ice cream,” her mother called her. Then the girl stops playing with her and listens to her.
The mother repeats the call and the child crawls out to the dining room with the doll beside her. But if her mother walks into the room saying, “It’s time to brush her teeth,” with a toothbrush in her hand (something she doesn’t like), she instead ignores her mother completely. So, you will be extra enthusiastic about playing with dolls.
Although these three situations seem very similar at first glance, the girl interacts with the circumstances surrounding her in each of the three cases and responds with different reactions. .
As each individual with Rett Syndrome tries to confront the outside world and communicate, they have a small repertoire of choices to choose from.
They don’t have many ways to express themselves and their signals are often limited in strength and persistence.
How long they intend to sustain their efforts depends on their previous experience and current possibilities.
And, of course, it also depends on how important it is for them to get us the message of their doubts.
“Sometimes there is a happy ending, as in the following example.”
A little girl is eating lunch. She loves school lunches, opening her mouth wide and bending her upper body toward a spoon, expressing happiness with her whole body.
But after a while she suddenly refuses food. She can tell from her gesture that she wants food, but she closes her mouth tightly when she brings the spoon to her mouth.
She doesn’t like it when she runs out of spoons, but she won’t put any other food into her mouth when you try to spoon it.
Her teacher will try other foods, salad bread, water and even juice. But no.
The child wants macaroni pudding. In the end she bursts into tears. There her teacher gives her a fresh pudding that has been taken out of the depths of her plate. she eats now and stick your cheeks.
Her problem was that the food on her plate was cold. She wanted to eat, but she wanted something warm. In this case, the child was as clear as he could be, and patiently continued to send a fairly simple message, allowing us to make the correct interpretation.
Also, two adults were involved in one child, and they could assist each other in guessing the child’s message.
It was quiet with no one else in the room and we didn’t have time constraints.
Sometimes it takes so many conditions to grant a small wish. “It doesn’t always have a perfect happy ending.” We cannot trust the correctness of our interpretation.
In other words, we cannot meet their demands. That afternoon, when the child and her mother left the day care center, I went home with them.
Coming home, her mother wanted to please her little daughter by playing the tape recorder. But the child is not pleased at all and even refuses to enter her living room.
She remains standing in the porch, looking out at the door. Then look at her mother. She started walking towards her living room, but she was soon back at the door.
Her breathing became heavy, her hands clenched, and she became more and more irritated. At last she broke into sorrowful tears.
At first, I thought that the situation was my fault, but I couldn’t get the feeling that it was my fault.
Not only did she not look at me, she even suspiciously tried to ignore me. Her mother also thought that this had nothing to do with me.
Her mother was baffled and puzzled, and she finally came up with a reason. Their daily routine was to go shopping before heading home, but today they went straight home from the day care center.
Naturally, this was a mistake in the girl’s eyes. She had failed to do what she always did and what she loved. It’s too late
to start over now, but her mother spoke to her in a very nice way.
She told her mother that she was confused and that she knew why it happened. And finally the girl was persuaded to go to her living room and listen to music.
Expression of Demand and Desire
All girls in the study were able to indicate their happiness and dissatisfaction through emotional, physical and facial expressions.
Most of them are also able to express “I don’t want you to do that” in a way that others can understand. How they express this depends to some extent on the reaction they get.
For example, if you decide not to go to physical therapy, you may resist or avoid the person doing physical therapy. If adults continue her physical therapy without motivating her, she will get angry and start crying. If it still doesn’t work for her, she may fall asleep.
If this situation is repeated often, she will fall asleep whenever it is time for physical therapy. Most of the girls surveyed are able to request the food they want when sitting at a dining room table where they can see the food.
But it is more difficult for them to express their needs and desires in other ways than mere emotional expressions when anticipating a situation.
For example, only a third of them are able to successfully express their hunger in a more advanced way. Approaching the refrigerator door, staring at her mother from the stove, and tapping on a picture on a plate are some examples of what they are able to express themselves.
About half of the girls are able to express their desires in a slightly more unusual way, but most of the cases are in very limited circumstances.
For example, close your mouth to the spoon, then look at the cup and then indicate that you want a drink. Some children stare at adults from the TV and express that they want to watch TV programs.
Others express a desire to go for a walk by approaching the person taking them for a walk, or by tapping on their outdoor clothes.
For the most part, most of these expressions of desire and will must be interpreted by someone who knows them well.
For others, this signal can easily be mistaken for other behaviors, such as whining. These girls don’t have the ability to express themselves in a very normal way, and in a clear way that everyone can understand.
Even if they cannot speak better than their siblings, most children have learned a few words and begin to use them in appropriate ways.
Very rarely, younger children tend to use words more often. Many girls often speak clearly when exhaling when hyperventilating, but it is also true that it is very difficult for those around them to understand that they are speaking correctly. .
Many parents describe this way of speaking as “she whispers.” It seems to some girls that it is easy to miss words, and to utter them when every utterance is surrounded by other sounds that make us imagine an entirely different utterance.
Some children vocalize and chatter frequently and vigorously, but it is not a language and has no meaning, much less a conversation.
As a whole, voices and broken words are rarely used for intentional communication, but are often used to express emotions or while playing. These girls sometimes use words to name pictures and objects.
However, they are sometimes thought to be using their language capriciously. Their speech impediments are evident when they really want to express themselves to the people around them.
I myself, like everyone else, have been trying to talk to them, and I have seen them fail. A child will focus all his attention on moving his whole body and moving his mouth, and at the same time, he will focus with all his might on the person to whom he wants to communicate.
Nevertheless, the harder they try, the less successful they are at creating words. It is often said, “It’s like the words are on the tip of your tongue and you can’t get them out.” Sometimes words come out “from the word itself” when the person is not trying to speak at all.
Many children can yell “Mama!” in moments of panic. In moments of harmonious relaxation, words may burst out. This phenomenon does not occur many times in a lifetime, but it does occur at some point in the life of many girls.
For example, one time a girl went to a mall with her father and was very distracted by a traffic light. While she was waiting for the blue person (a green light in the shape of a traffic light person), her father told her many things about her traffic light and what “red person” meant. It is.
During dinner that day, the child suddenly said in a clear voice, “A person of red color.” In other cases, there was a time when Grandpa was staying for a while. In the morning, Grandpa came down her stairs and said, “Good morning,” and the little girl replied clearly, “Hi! Grandpa.”
This, too, is far beyond her normal ability. Some parents report that when they are asleep, they make more vocalizations and verbal sounds than they can when they are awake, and they produce them better.
As this kind of information becomes available, I have a feeling that it will be very interesting to investigate these facts in a more systematic way. I mentioned eight cases.
The two girls I’m going to introduce this time make verbal sounds more often when they’re tired or when they’re about to fall asleep.
Many parents report that their daughters are more talkative and do better mentally and physically, even during epileptic attacks. In general, older children are quieter than younger children.
They have weak signals and are not patient with trying to communicate.
One mother said, “She seemed to really want to talk. I don’t,” she says.
In terms of motor skills, children with Rett syndrome are of course able to express themselves through movement and touch (e.g., a young girl can walk up to her outfit and hit her like teaching the willingness to go for a walk).
But the “gaze” mentioned here is the most prominent way to express one’s will. Gaze refers to looking at what you want to do or what you want to get (or a picture of what you want or a situation is drawn on).
To give an example, there is a girl who, while taking a walk with her parents, can stare at her own wheelchair and express where she wants to go in it. Another example is looking at something you particularly like on the table.
Often the girl will turn her eyes from her adult to what she wants, then turn her eyes back to the adult, and repeat until the adult understands the message.
Two-thirds of the children surveyed perform gazes across all ages. Other girls also seek information through their own eyes, such as by “asking”. A little girl immediately noticed that the fan in her closet had been removed and turned away from her mother to stare at the empty wall until her mother explained it to her. .
When a girl takes one look at a stranger, she then looks at her mother, who she knows and would introduce him to. Then she begins to get to know her new person better.
Among the children surveyed, this ability to use their eyes to give and request information is particularly pronounced. In other children, this ability is even weaker and more difficult to interpret, sometimes due to their technique (very short and quick glances) and sometimes their It is also due to the fact that they do not expect the signals of and consequently do not pay attention to their signals.
The ability to gaze will not decline as you age or as your symptoms progress. On the contrary, their abilities often improve and become used for communicative purposes.
The eyes often become more fixed and the person slowly looks away at the observers around them. Even if the girl is mentally and physically regressed and other means of communication are no longer working, the gaze is still stable.
When we talk about those who are not described as ‘the lookers’, many still think that they are ‘speaking with their eyes’. They express their feelings and moods through their eyes, and even children who otherwise have very little repertoire of gestures often have very expressive eyes.
Children with Rett syndrome also express themselves in other ways.
In a way that may not be a conscious volitional exchange but still functions as a signal that conveys information to us, such as the intensity of the full-time behavior or the general level of the child’s activity. is an example of the degree of narcissism is another example of that signal.
If a girl becomes withdrawn, it may be due to mental or physical factors, or she may be completely absorbed in an irreplaceable behavior. not.
Her reclusiveness was also me to let her know that she didn’t want to participate, that she found something too difficult, too stupid, too boring, or that she couldn’t concentrate anymore and didn’t want to do it. It may be a more direct signal to us.
Many people can object or walk away from this situation, but if they can’t, there aren’t many options.
Rett’s children can only scream, cry, shut themselves in, or fall asleep. If you have a repertoire of only a few reactions and signals, you have to express many things with one action.
If a girl becomes confined, in some cases she will say, “It’s boring. I’m not happy and I’m going to get really sick. If no one can help me turn and move my wheelchair, I have no choice but to withdraw into myself.”
Those who know the child well know when she really wants to be alone and when she needs help to get out of her autistic state.
Avoiding being at home after graduation
Avoiding being at home after graduation
Lecture by Kimi Nakamoto
(1995.7.29, at Akagi Summer Camp)
On 1965, my eldest daughter Yayoi was born with severe physical and mental disability due to abnormal delivery due to marginal placenta previa. Total blindness due to cerebral palsy/optic nerve atrophy .
On 1968 transferred to Tokyo. Since then, she has been repeatedly transferred and participates in activity for disabled ones everywhere.
On1977 began active activities at the Nerima Association for Parents of Disabled Children (Persons)
On1979 Began working on issues after graduation
On1980 Established a group to create a public training center (workshop) for people with disabilities in Nerima, and became the representative
On1985 Creation of commuter facilities after graduation, emergency temporary protection system, community development ・Focus on eating training, study sessions, administrative planning, etc.
On1994 Resigned as chairman of Nerima Parents’ Association of Disabled Children (persons) Became representative of municipal Fukushien Parents Association Liaison Committee Introduction Her daughter Yayoi will be 30 on her August 6th.
I was born in 1940, so I am already 55 years old. I was sent to a completely different era from those who are going to a special needs school now. Even when I came to Tokyo, there were no commuting facilities in the area, and when I was born, I had a lot of bleeding due to placenta previa, but there were no ambulances in Nara.
It was an era when the master ran. I’ve lived in an era like that, so I don’t know what to say.
but I think it’s a feeling that aunts talk about their hardships, but on the other hand, the mothers at Oizumi School for the Handicapped.
When I see people who are very confused and confused after graduation, I think that it is difficult because they have lived through such painful and painful times, but I am confident that I can do it if I try, so I am okay. .
I think that the movement to build a protective barrier on the Kan-Etsu Expressway, which I briefly talked about earlier, and the current French movement against nuclear tests are all citizens’ movements.
After coming to this movement, I realized that the disability movement must be a civic movement, not a movement for the disabled. I came here with all my might, wondering what the disability movement was, and always searching for a philosophy. That’s why I feel like I’ve turned 55 in no time at all…
When I didn’t know anything about it, I wanted to send a severely disabled child like my daughter to a school for the disabled.
This movement was developed ahead of the 1980s, and the Tokyo metropolitan government’s all-enrollment system, which allowed children with disabilities to go to school in the same way as ordinary children, became a national compulsory system.
It became commonplace for the first time to receive notices of school enrollment from.
But in our time, it was an era when only enthusiastic parents could go around each school and negotiate with each other and send their severely handicapped children to schools for the disabled.
In this way, there was a sense of crisis after graduating from the fact that there was no way out even though the enthusiastic parents started the movement to enter the school.
I’ve been living in peace for 9 or 12 years, but I was worried about what would happen when I left. On the other hand, when I was still in elementary school, you couldn’t go to school without your parents. is not it.
That’s why when I hear from mothers who are currently enrolled in special schools, it seems like it’s difficult for the parents to get together.
I hear that although there is a PTA, there is no leader to organize day care facilities. But I knew that if I didn’t do it, nothing would happen. I knew a lot of parents who were doing it again.
From around middle school onwards, I began to have free time until my daughter came home from school by bus. I started working on it concretely.
I haven’t stood at the top until then, but I always follow the top people and go to the Ministry of Health and Welfare and the Tokyo Metropolitan Government.
And I keep in mind what the situation is all the time and say, ‘Haha, I’ll do it like that. I wonder if it’s something… if I go to a place like this, will they listen to me?”
Therefore, when I thought that it was finally time for me to address the issue after graduation, I had a rough idea of what the Ministry of Health and Welfare was like, what the Tokyo Metropolitan Government was like, and what Nerima Ward was like.
I’ve come to understand what kind of situations I’m not good at and when I say things like this, I should nod my head. It’s not difficult, I’ve experienced it myself.
Even if I didn’t understand the reasoning, until I became a leader, I always followed where my seniors and teachers told me to go.
After school lunch, I put Yayoi on my back and got on the train (because I didn’t have the confidence to drive a car at that time) and went to the Tokyo Metropolitan Government Office. I have been on the same bus as Nowadays, my husband drives me to this venue like today, but at that time, the idea of men was that women should do housework and raise children.
Therefore, they are not interested, and they are looking exclusively at the company. To the point where I wouldn’t even know my wife was around.
It was a time when I was completely immersed in the movement for disabled people, and was completely absorbed in it. It was very easy to do while my husband was away from home.
By following along without flinching, I have come to understand what political parties and parliament are saying.
You’re a parent who really doesn’t have any qualifications. After graduating from high school, I worked at a bank for about five years, got married, and had my first child, Yayoi.
It seems that there are not many public outpatient facilities where parents have spearheaded the movement, so I have had the opportunity to be called by people and talk about their achievements.
You can see the father’s face here, but he is usually called in a group of mothers, and although he speaks to mothers, most of the time, just listening to them makes him sick, like me.
We can’t really do it, so I’m not sure if it’s good to go, but it’s a fact and I’m not exaggerating. However, I have a real feeling that if I study hard and work hard, it will open up for me.
“As soon as you start exercising, you will never see results, and you won’t even see the light.”
Everyone has a sense of crisis that there is no place to go after graduation, so at the stage of doing something, everyone gathers.
People gather when they call for it, but it takes years to see what they can do. One of these days it’s going to be devastated and chipped like a tooth falling out. There was a time when one or two people came to the point that they really worked hard and made it to the end.
Since we aimed to create a public day care facility, a budget of “hundreds of millions of millions of millions of dollars in land acquisition costs for day care facilities” was included in the ward bulletin.
That is the first time many mothers really realize it. There used to be a meeting (“Association for Establishing a Public Practicum and Workplace for Persons with Disabilities in Nerima”), but people who had not come even after calling out to them began to come there for the first time.
The location is decided and construction begins. An open ceremony is held and recruitment begins. After going through that process, I asked myself, “What is a human being like?” While I was working there, there were times when I thought that there was really no way out for such people, and they picked me up.
But I’ve come to think that if we’re all human, that’s the true nature of a human being, and I can’t get over it unless I can see it concretely. Even the people at the government office initially said, “Mr. Nakamoto, it will cost hundreds of millions of dollars, even if you buy one place…
There are people who are against the residents’ movement.” There are times when people say, “What about you guys, you’re spending a lot of tax money on facilities for the disabled, aren’t you?” Managers change every 2-3 years.
There are some section chiefs who understand my feelings. All of them, including that, are human…
I thought that this kind of facility would not be possible without people doing it this way. Public facilities are like that, and some parents see the ward bulletin and enter suddenly. What is it? But there are no such facilities.
Thanks to Yayoi, I realized that it is only through the movement of mothers, or the Kan-Etsu Expressway’s movement to say, “This kind of wall is a problem,” that the lives of residents will improve. I was able to find out.
Yayoi really taught me a lot of things. Yayoi is probably my life teacher. Neither my father nor my mother nor my teachers taught me this.
No one is useless even if they have a serious disability. I’ve come to feel that I’m influencing them in some way. When Yayoi was little, there was a tendency to put children in institutions and mothers to work and contribute to society.
But I didn’t want to leave Yayoi. I’m glad I raised Yayoi without putting him in a facility. There is a part that I can do it because Yayoi is there.
There are times when I go home and feel dazed because of various painful things. When I’m thinking, “I shouldn’t have said that, should I call you now?” Yayoi, who can only speak five words, says, “Mama, Mama.” Yayoi’s feelings change.
If you can live with your child like that, you can clear up a lot of difficult things. If you can do exercise while living well with your child, it will be easier for you to do what you are doing, so I would like you to do your best at the beginning of exercise.
When trying to carry out movements for persons with disabilities in the community, the current Japanese legal system is divided into categories of disability, such as the Law for the Welfare of the Mentally Retarded and the Law for the Welfare of the Physically Disabled.
Policies, systems, and handbooks are also divided according to the type of disability, but when you look inside the community, even if you divide them by disability, the voices are scattered and small, and among the population of 600,000 people in Nerima Ward. There are really only a few people with disabilities, so no matter how much you raise your voice, you can’t persuade the ward administration.
If you don’t raise your voice as much as possible, you won’t be able to pass the assembly, and it will be difficult to get signatures. The reason why the Nerima Ward Parents’ Association of Disabled Children (Persons) was established is that it is a group that anyone can join regardless of the type of disability.
This is a group for parents of handicapped children. The movement began with this association as the foundation of the movement.
I think this was the first thing that made it easier for us to put together, and we didn’t have to split up.
Conducting a fact-finding The Nerima Ward Welfare Division did not know the number of students enrolled in schools for the disabled and the number of students scheduled to graduate by year, so we went to the board of education and other bodies to investigate the actual situation of schools for the disabled around the ward.
(1979-1980) Launched “Association to create a public training center (workshop) for persons with disabilities in Nerima”
(1980) I learned that if we do not focus on the purpose of creating a public day care facility, we will not be able to foresee it. Since the Nerima Ward Parents’ Association of Disabled Children (Persons) alone is weak, we called on other groups (there were 11 groups at the time) that had members who needed day care facilities and asked for their cooperation. did.
As a result, four organizations in the ward (“Parents’ Association for Holding Hands”, “Parents’ Association for Physically Disabled Children”, and “Sumire-kai” (disappeared halfway through)) and individual participation of mothers who are desperately about to graduate.
A two-pronged cross-organization was created. Contributions from each organization (5,000 yen per year) have disappeared in the cost of copying.
I can’t do this kind of exercise if I don’t do it myself with a lunch box and a chore. It’s no use trying to get someone else to do it. As a method of campaigning, there is a method of applying for subsidies based on performance while raising funds for bazaars etc., accumulating assets, and aiming for incorporation.
However, we narrowed down our objectives and repeatedly submitted materials, petitions, and requests to the administration and parliament, and chose the method of encouraging the administration to create it. I have learned that there are many different ways to exercise.
Frequent study sessions (things to learn at study sessions and facility tours) I thought about getting information by setting up antennas in other prefectures and other wards.
I was told that Tokyo was progressing, so I looked into what other wards were doing. I also got information through the teacher’s union and the PTA of the school for the disabled. When visiting the facility, it is important to know what legal basis (eight welfare laws and ordinances) it was built on.
It is written in the brochure and business overview. Of course, it’s good to see what kind of building it is and how the children are fed, but when you visit a facility and try to build it, the perspective is different.
We invited the director of a private and ward office and the staff of a ward office (chief of guidance) and held a study session (on issues regarding facilities, operating financial resources, securing staff, etc.).
・Life training center according to the ward ordinance
・Subsidy-based commuter training business (joint workshops, etc.)
・A day rehabilitation facility based on the Law for the Welfare of the Mentally Retarded
・A day training facility based on the Law for the Welfare of Persons with Physical Disabilities
・Heavy duty training facility in accordance with Tokyo Metropolitan Ordinance Welfare six laws (currently eight laws)
・Public Assistance Law
・Child Welfare Act
・Act on Welfare of Physically Disabled Persons
・The Law for the Welfare of the Mentally Retarded
・Elderly Welfare Law
・Maternal and Child Welfare Law Materials such as ordinances
and guidelines can be obtained from the “Information Disclosure Office” of each municipality.
Welfare work office ordinances and facility staff regulations can be copied by paying 10 yen.
It also says that day care facilities must be open from 9:00 to 5:00. “Even if you are in a wheelchair, you will not be able to enter an institution for the mentally handicapped as long as you have a love notebook.”
They give up all sorts of reasons, such as not being able to accept it because they don’t have the facilities, but they just give up because they don’t know.
We have no choice but to start the movement ourselves. Nerima Ward was the same at first. When the facility was being rebuilt, we had slopes, elevators, and other facilities installed, and added the severity of the situation.
“Even today’s immature laws are often ignored.” That’s why when you keep that in mind and go to the head of the ward, the mayor, or the administration, there are many things you can argue against.
I held up this law and approached him saying, “Isn’t this written here?” This is something I learned while working out. Who built it and who operates it (its pluses and minuses)
・Municipal ward management
・Municipal private management (entrusted to social welfare corporations, foundations, etc.)
・Private While studying these matters, we selected a possible day care facility based on the actual situation in Nerima Ward (feeling whether it would be possible to build it) and the requests of the people participating in the movement (mothers with severe disabilities and multiple disabilities).
I chose a living training center run by the ward. The reason for this is that even children with severe disabilities can be accepted, and the conditions for treating users (staff placement, etc.) are the best.
I realized that the more severe the disability, the more the public power (financial resources, professional staff such as nurses and physical therapists) is essential.
I also needed a commuter bus, and I came to understand that it was important to establish staff. At the same time, the quality of staff (qualifications) is also an important issue. There are limits to what parents can do.
“What is welfare?” It’s not welfare if parents make it, manage it, and look after it. It also hinders parents’ overwork and the mental independence of disabled people.
Our responsibilities as a local government are also specified in the Basic Law for Measures for Persons with Disabilities. “Once you buy the land, it becomes the property of the ward, but you have to operate it forever.”
We have to guarantee the retirement benefits of our employees. That’s why I aimed for the most difficult ward administration. Aim for that, and if you can’t do it, drop the conditions.
If it is outsourced to the private sector, the ward does not have to take responsibility even if an accident occurs. Of course, there are also downsides.
How to exercise I almost always participated in the administrative plans (Long-Term Comprehensive Plan for the Ward and the International Year of Persons with Disabilities Plan) and submitted requests.
You should also know that although the contents of the plan say something splendid, they do not do it concretely.
I learned later that it is important to submit documents and appeal the actual situation. How do you feel as a parent, why do your children need it, what are their problems?
Use appealing text to leverage ideas (International Year of Persons with Disabilities, administrative plans) and laws (Basic Law for Measures for Persons with Physical and Mental Disabilities, etc.).
I do. “It takes years to build a facility after exercising.” Those in charge of the movement (when building public things) must grasp the whole and make commitments one by one.
Exercise must be continued. If you’ve been involved for two or three years, when you face the section chief or ward chief, you can’t argue with them, saying, “I’ve made a promise to the previous section chief.”
Continuing activities are difficult for the PTA. “When I go to talk to the government, I always go with a few people and listen together.”
I never went alone. 5-6 people is a good number. That’s why I’m going to see the feeling. It also prevents you from missing something important. It can be frowned upon in large numbers.
[Process until the facility is completed]
Administrative departments (Disability Welfare Division, etc.)
Ward’s understanding – Appeal the necessity and make it aware. –
Administrative plan – Adoption by parliament
Persuade the section chief/ward head to obtain their approval. –
Budgeting – Land acquisition – Design – Construction – Opening
“We will submit petitions and petitions to Congress.” Political parties are fair all around.
If you don’t, you’ll get labeled as you please. Individuals are free to have their own thoughts and beliefs, but as a society, it’s bad to go to a specific political party.
If you stick to a specific political party, you will be opposed by others and you will be ruined. I’m going to do it in a nonpartisan way.
I will listen to all committee deliberations, and I will go to explain individually to the member who raises a question. It is important that we never give up trying to persuade the administration and parliament.
No matter how rushed it is, it will take at least 5 years to complete the facility, and 7 to 8 years in general.
In particular, it takes time to acquire land. For 30 to 48 people, 1,500 square meters will be required. (The area required for one person with a physical disability in a wheelchair is different from that for a person with an intellectual disability who can walk.)
Regarding land acquisition, the ward has not said anything, so I will ask. If you haven’t made an acquisition yet, ask where you’re stumbling.
In that case, the parents will actually walk around and look for them. I had a hard time finding land, so I went to the agricultural cooperative to ask for it. At that time, it was a time when land was sold for inheritance purposes, so I once went to see the cabbage fields in the heat of the summer, drenched in sweat.
In reality, the land division is quicker to pick up information than the parents, but the hard work of the parents forced the welfare division and the land division into a situation where they had to do something.
You can. That’s what drives the district.
That’s why I say that even simple mothers can do it. faith as a leader I am a single mother, but as someone who has been in charge of the movement as a representative, I began to feel at the stage of acquiring the land that I would not do anything to induce profit to individuals.
When I got home, I wanted to be Yayoi’s mother, so I raised her all the time, but when I acted as the representative, I abandoned my notion of being a mother. When the ward side began to recognize my influence as a representative, I thought that if I went out and did something irresponsible, they would see me instead.
As a representative, I did not do anything to give my child an advantage. When deciding on the planned site, I did not choose a location that was advantageous to me, but chose a location that took into consideration the geography of the entire ward.
I think that the accumulation of such things has earned the trust of the ward. Challenges ahead We created a liaison committee called the Nerima Ward Fukushien Parents’ Association Liaison Committee for parents of day care facilities in four places, and conducted a questionnaire survey. A problem arose.
In fact, one-third of parents would like to enter a public residential facility if they cannot provide care for a long period of time. It took half a year to compile this survey and collect statistics.
We know that the number of single-mother families is increasing. There are very few cases where a mother dies and can go to a day care facility. Therefore, in such a case, the welfare office will have to deal with it. I would like to have them do case management and coordinate measures that suit the child. “
Now I want to form a liaison committee to create a system like this, so I stopped the construction movement.” I’m thinking of a way to leave the production to young mothers and back up my aging parents and their co-visitors. After building a facility and entering it, the problem of aging awaits. (Recorded by Ruriko Tomii)