SEPARATE ACT FOR HEALTH AND CARE SERVICES FOR CHILDREN

The Norwegian legislation in the field of health and care is a general legislation that does not differentiate between adults and children.

The Lion Mothers constantly come into contact with families who have children with great service needs. Both through our contact, but also through the media, several cases have come to light in recent years which show that there is a need for separate health and care services legislation for children. Children's very own specific needs are not taken into account when designing services for this particularly vulnerable group, and we feel that existing legislation is not clear enough to ensure that children with large complex needs receive proper services.

Several families have experienced that in the case of complaints and supervisory cases with the County Governor, the principle of municipal self-governance in choosing the design and implementation of services weighs more heavily than what the specialist health service believes is necessary for the child's help to be properly carried out.

The legislation must clarify what considerations must be taken both in the design of and in the actual implementation of services for children. This is lacking in the current legislation.

The Løvemammaen therefore want to submit input to the Storting and government about the necessity of creating a separate Health and Care Services Act for children. In this legislation, the UN Convention on the Rights of the Child should also be transferred to the legislation. The children's ombudsman has stated in writing that children's rights are too little visible in the health legislation. When they have been contacted, they have referred to their supplementary report to the UN Children's Committee where they recommend that the UN Convention on the Rights of the Child and children's rights be taken directly into health legislation to a greater extent.

Løvemammaene proposes that this separate health and care services act for children is added to existing legislation and must be followed when it comes to health and care services, both in municipal decisions and NAV decisions for people under 18, but also mentally disabled (with mental age as a child). It also has sections and areas of responsibility that affect the specialist health service.

Here are some very important and absolutely necessary points that we believe must be included in a separate health and care services act for children:

UNs childconvention

The UN Convention on the Rights of the Child is incorporated into this Health and Care Services Act for children, by direct clauses that reproduce articles 3, 23 and 24. In addition, a separate clause must be created stating that no articles of the UN Convention on the Rights of the Child shall under any circumstances be breached during the design and implementation of health and care services for children.

Defensibility

What constitutes proper health and care services for each individual child must be defined by the specialist health service. This must be followed by law.

This legislation must also define what is involved in assessing professional suitability for children. What should be measured when soundness is to be assessed?: In the assessment of soundness lies both professional soundness with the right professional education, or if there is no requirement for professional education, professionally sound way of organizing the service, and also soundness in relation to scope in terms of time/number of hours set of around the child, professional soundness around training and whether the scheme provides enough training for the individual service provider (employee) in what is to be carried out. (One must refrain from using a soundness concept that measures only legal soundness, services for children must also be medically sound.)

A municipality or NAV shall not have the opportunity to review the specialist health service's assessments of what is necessary for the best possible health promotion measures for the child.

This also includes that specialists must be listened to when it comes to, for example, the choice of aids, assessment of communication aids, access to aids, treatment equipment, speech therapist needs and recommendations for special training stays or other significant measures that will promote the child's health and functioning in day-to-day life .

Cooperation

If the municipality or NAV is summoned to meetings at the specialist health service, they must be obliged to attend, both in individual meetings, but also in follow-up meetings where there is a need for it.

Coordinator

Each municipality is obliged to have its own coordinator department or coordinator pool which are completely independent / independent in relation to the departments that otherwise provide services in the municipality.

As soon as the municipality receives notification from the hospital/or other agencies that there is a child in the municipality who will need coordinated services, this coordinator team must be connected and the family can choose the coordinator from there.

Separate regulations should be drawn up for the kind of competence, tasks and area of authority coordinators in the coordinator department in each municipality must have. It is an important job to ensure both good coordinators and that families get the help they need and are entitled to. The Løvemammaen strongly request that user organizations be included in planning what is important to include in regulations regarding coordinators.

Organization of services for children

The child's parents (carers/foster parents) are the child's spokesperson and must be listened to when it comes to wishes about the type of organization of services in the home that will best suit the child and the family, within the soundness requirement set by the specialist health service. The child must also be included in conversations based on maturity level (referring here to the Patient and User Rights Act) when it comes to services that deal with the child.

A clear right must be the right to own adapted teams around a child when there is a long-term need for services in the home that exceed an average of 10 hours a week. (Long-term: When the specialist health service assesses that there will be a need for 6 months or longer.)

The size (number) of the team must be defined by the specialist health service in collaboration with the child's carers, in order for the service to be provided appropriately. This must be assessed from child to child. The team must not be larger than the child gets to know each assistant/healthcare worker well. Children need predictability, security and familiar people around them. Each individual employee in the team must spend enough time with the child that they can carry out procedures flawlessly and must be able to handle, either alone or together with a parent/other, what, based on the child's situation, is assessed as likely to occur with the child. At the same time, the team must be large enough to cover the child's scope of help in a responsible manner and which does not violate working time regulations.

Around children where there must be 2:1 staffing all or part of the time, no parent/carer can be forced to be person no. 2. Where parents/carers want it, the municipality must not be able to deny that parents/carers are no. 2, but parents/carers must receive remuneration (salary or care allowance?) when they are permanently used to provide health care to their children.

Individual decisions must always be made regarding services for children where the organization of the service is reflected in the decision. Attached to the decision must always be a statement from the specialist health service about what they believe is necessary for a safe and proper service that meets the child's needs. (comparable to PPT giving expert opinions to schools where the decisions cannot deviate from the recommendations, and where a complaint process can more clearly deal with deviations in relation to the specialist recommendation).

Where the need changes, it shall be sufficient for the parents to report this, a new specialist opinion from the specialist following the child can be obtained from the municipality and/or NAV if necessary.

Where children have other forms of communication than clear spoken language, the municipality/NAV must set aside both hours and finances to be able to cover the need for courses and training so that the child can communicate with all his assistants/health care assistants.

Children who have a decision on health care that exceeds 10 hours per week must have the right to take these with them out of the municipality, on holiday etc. in the same way as with a BPA scheme.

Families who must have health or care services (assistants) of a certain extent in the home, i.e. an average of 10 hours per week or more, must have the right to participate and also have the right to co-determine interviews of people who are employed in the child's team.

Families must also have the right to co-determine which people will work in their home and must be listened to if they feel that a healthcare assistant/assistant is not suitable for the job in their home.

Municipalities/NAV/the specialist health service shall not have the right to prohibit close friends or family from being employed in schemes around children.

Children and BPA

When parents want it, they have the right to have the health care provided as BPA if the health care exceeds an average of 10 hours a week.

When measuring hours for BPA around children with extensive follow-up needs, the specialist health service together with parents/carers must give a statement on the necessary need for help in estimated hours.

When measuring BPA hours for children, hours must be calculated for necessary health care (both skilled and unskilled), hours for relief, hours for support contact, hours for practical assistance and hours for personal assistance, in order to arrive at the right number of annual hours in a BPA decision for a child. If parents themselves wish to undertake some of the follow-up instead of BPA or home services, parents must be reimbursed for this.

The responsibility for health care for children included in the BPA scheme rests with the supervisor for each individual BPA scheme. This means that the responsibility lies with the parents/carers. Where the specialist health service follows up the child, the responsibility and approval of soundness should lie with the specialist health service in collaboration with the supervisor (the parents).

Relief

Parents must be able to decide what kind of organizational form of relief they want. Private respite, respite in an institution, support contact, respite at home via home service or BPA.

If parents want private respite care and do not have family or friends who can provide, the municipality shall be obliged to advertise for a respite family. If the family themselves have someone they want to use as relief, the municipality should not be able to refuse this without properly assessing them. The fact that the relief worker is related to the child is not a reason for refusal.

The Health and Care Act for children must have a separate prohibition against using institutions, which are intended for the elderly and adults, for relief or children's accommodation.

Alternative communication

Children who need alternative forms of communication need "helpers" who have time to help develop their language. Parents now spend an enormous amount of time on this. It is desirable that the use of time for the children's opportunities for communication is seen as part of the children's health. Therefore, communication should also appear in this legislation, in addition to what has been added to the Education Act, which deals with time in kindergarten and school. Hours for this work, depending on who is agreed to have the main responsibility for preparing the material, are included in any hours in care pay, BPA hours, or hours for home care.

The alternative form of communication is actually the child's voice and it is just as important to get help as if the child, e.g. should lack walking function, or need medication. It is enormously time-consuming to help the child to be able to communicate and make himself understood.

(This means hours for e.g. work on creating various materials, entering concepts in Tobien, Rolltalk, keeping order on language programs, pictogram boards, daily overviews, making language books, pictures etc, time spent on both acquiring sign language, signs - addressing and helping the child learn a language at home, etc.)

Deviation

Parents must, on their own initiative, be able to report deviations into the municipality's deviation system and must have insight into how the deviation is followed up.

Training

Parents must always be allowed to participate in the training of those who will work in their home.

Parents must also be able to provide training alone where this has been clarified with the specialist health service as necessary, sound and appropriate for the child.

Each individual healthcare assistant/assistant must be able to receive training at the hospital if the specialist healthcare service considers it necessary and/or justifiable. (It does not hold that the municipality or NAV believes that it is sufficient to train each other).

Child palliation

Each county must have its own child palliation team. The children's palliation team must function according to "The National Professional Guidelines for palliation for children and young people regardless of diagnosis, Norwegian Health Authority 2016".

Each child palliation team must consist of at least a paediatrician, children's nurse, psychologist and social worker and preferably also a clinical nutritionist and physiotherapist/occupational therapist.

The children's palliation theme must be connected at an early stage around children who have diagnoses that are life-shortening, life-threatening or permanently life-limiting. Such a team must be in collaboration with the family within a few weeks after the child has been diagnosed/you have become aware that the child has such a condition.

The municipality must immediately organize a service around a child when they receive notification that a child with palliative care needs exists in their municipality. The municipality must appoint a coordinator for the follow-up.

Each municipality must have a "samzone" which must be obliged to cooperate with the child palliation team within a few weeks after the child's condition and need for child palliation have become known.

A cooperation agreement must be drawn up with the family and the municipality the family lives in, which must contain a description of the need for help, measures, scope of services, the family's wishes (both siblings and carers) and the necessary contact information for everyone in the team.

Compulsion

Children must not be subjected to unnecessary coercion in treatment and examination situations. Whoever provides the service (specialist health service, municipality, county, doctor's office, dentist's office, health centre, home care etc.) is obliged to arrange, both in terms of time and through clarification with parents, how examinations can best be carried out to prevent trauma in this particular child .

Siblings as next of kin

Earmarked funds are needed to establish good offers for siblings as relatives. This can be a sibling team that takes care of the sibling with offers such as e.g. play therapy individually or in groups, conversation therapy, events such as "sibling weekend", courses, day trips or other leisure activities where the sibling is, for once, the focal point.

The relationship with the municipality's free discretion, finances, breach of the Child Health and Care Services Act.

Rights in the Health and Care Services Act for children must take precedence over the principle of the municipality's right to self-determination. This is because it is necessary for children who have complex health needs to have these covered properly. It is not the municipality that has the competence regarding these children and therefore should not have the opportunity to assess alone which measures/services they consider adequate for the child.

Finances cannot be used as a reason for refusal for the organization of health and care assistance for children. (The municipality can apply for state reimbursement when the expenses exceed the cut-off point for reimbursement for particularly resource-intensive users.)