English -about Einstok börn / Unique Children in Iceland

 

Unique Children in Iceland

Einstök börn (Unique children) is a support group in Iceland for children with rare diseases.  The group was established in March 1997 by the parents of 13 children who had no other support group to go to.  Today there are more than 500  families in the group.

The Icelandic population is small so most of the children suffering from rare diseases are isolated, with mostly one or two children suffering from each disease.

Since most of the children in Einstök börn spend long periods of time in hospitals, one of the group’s main concerns is to establish a good an prosperous relationship between parents and healthcare professionals to make them aware of our unique needs within the healthcare system.

Our future goals are to keep strengthening the group from within and making rare disorders more known in our society than it is today. To make sure that people have access to understandable information about their diseases.  We also want to make sure that in Iceland there will be a place that collects information on rare diseases and gives us a chance to participate in gathering and sharing information within Europe and the world.

For our future goals we want to make sure that Iceland will have a program that collects information on rare diseases and gives us a chance to participate in gathering and sharing information within Europe and all over the world. We want to make sure that people have access to understandable information about their diseases and to educate the society. And to strenghten the group from with, unite parents and patients with rare diseases.

 Einstök börn can be contacted through email, einstokborn@einstokborn.is

 

Volunteer work

All work carried out on behalf of Individual Children is done on a voluntary basis, with the exception of the full-time managing director / family specialist of the association.

To cover the costs associated with daily operations, etc. use the funds, which fundraising, membership fees and the like support.

Many parents in the association are members of foreign support associations and have through them come into contact with parents of children and young people with the same diagnosis.

Such relationships are valuable for families as information about medications, procedures, training and aids is often exchanged to name a few. The support of other families in similar situations is valuable.

For most of our members, such support can only be found abroad. In addition, it has been found that although the Icelandic specialists are extremely good, they often do not have enough information about rare diseases and impairments, and usually parents and children / young people themselves become the main experts by obtaining information from foreign sources.

Objectives

The association is supporting the families of children with rare diseases or syndromes. Protect their interests, work with and educate the government and educate the public about rare diseases.

The association seeks to assist parents who have little information about their children's illness, with the help of the internet and through co-operation with parent associations in other countries.

The association also provides grants to families to attend conferences, go on vacation or do their own exercise.

Every effort is made to offer a varied education and a self-sustaining program for members - but this includes educational work with, for example, educational evenings for parents, family meetings, general chat and social meetings, also offers entertainment and social time for members such as Christmas dance, Easter bingo and much more.

The association wants to be aware of what is going on and happening in society regarding children and young people with rare special needs, and also wants to open doors into life and the situation of the company's families. In 2007, the ten-year anniversary magazine of Individual Children was published, which was ambitiously edited by children, teenagers, parents, grandparents, siblings and friends, as well as professionals who all have in common that they either live with a disability or illness or are connected in one or another way.

The association wants to draw the public's attention to the situation of children with chronic rare diseases and the importance of parents and children having the opportunity to go abroad to meet a specialist in the disease, attend conferences to obtain information and meet other families in the same situation. It is important for parents of children with rare diseases to communicate with other parents who have children with the same disease in order to obtain information as knowledge and specific resources are not available in Iceland today.

The association wants to increase its promotion in order to strengthen the association's grant fund, as more and more people apply for grants for medical / information trips abroad.

The association is doing its best to push the government in the preparation of a national plan for rare diseases that was supposed to be ready in 2012 but has not been done.

The association wants the government to know that it is important that LSH has a center for individuals with rare diseases and rare syndromes that is run by LSH's genetics department, but that this includes all specialists who need to be involved in each individual.

The association wants to strengthen and increase the knowledge of professionals in the country about rare diseases and rare syndromes and the very special nature of these diagnoses because knowledge is very limited about diseases or their development, quality of life or medication.

The association wants to support the siblings of children who are diagnosed with serious inherited diseases. Help them understand their sibling's illness and what it means in the daily life and genetic makeup of the illness.

The association wants to support parents in complex situations, system problems and resource services.

The association wants to support professionals at municipalities regarding guidance in care and services for more specialized diagnoses.

The association wants to support grandparents who need interviews due to communication problems that arise within families and others.

 

Daily management

The association is run by a 7-member board and a manager. The board meets monthly and more often if necessary. Day-to-day operations are in the hands of the company's managing director, who works at a 100% employment rate.

The association office handles all daily tasks related to grants, membership listings, registrations, interviews with parents, information sharing, communication with institutions, information dissemination, fundraising, media and more that arise in the operation of a company like this.

Checklist for parents

When you are unable to work due to your child's illness, it is good to keep in mind:

1) Sick leave with the employer. After that.

2) Sick leave with a trade union. When that right runs out.

3) Parental payments at Tryggingarstofnun when all rights have been used and if the conditions are met.

Start by checking your employer's rights. (If a child is older than 13 years, you are not entitled due to a child's illness, only due to your own illness). You are entitled to childcare allowance / care card from Tryggingarstofnun Ríkisins (TR) for a child with a chronic health problem. The doctor sends a certificate and the parents fill out an application form. Care must be taken to renew assessment as needed. It is important to keep track of all receipts that show the costs paid for the child's illness. It helps with argument. Apply for a repeal of car taxes at TR once the care payment has been approved. If a parent is on maternity leave, there is a possibility of extension due to a serious congenital illness of the child. Parents need to get a medical certificate which is sent directly to the maternity leave fund. Parents / guardians will then be notified with a ruling and how long time they will receive. These rights can be applied for until the child's 24 months of age. If a family lives outside Reykjavík area, it is good to keep in mind: Refund of travel expenses from SÍ. Daily trips refund for trips 20-200 km each way. You can get more information about refund of travel expenses at:  https: //.sjukra.is/heilbrigdisthjonusta/ferdakostnadur/  Longer travel and air travel refund is limited to one trip per week. In the case of short and repeated trips due to serious illnesses, Sjúkratryggingar also refund part of the costs. You will need a travel document from your doctor and a form to confirm your arrival. Return to Sjúkratryggingar agents in your municipality, usually the district commissioner's office. Refund for a rental apartment in the town, 80% of the cost with a certain roof of the cost, while a child is hospitalized. Requires confirmation of stay during stay to get the Support and Counseling Team for Chronically Ill Children in collaboration with Individual Children refund by the Health Insurance agent. Take care if your union owns an apartment in town that could be followed. Members of Umhyggja's Associations have access to their hospital apartments. See more on umhyggja.is website. Check the family insurance with the family insurance company. Health insurance and insurance for a child's hospital stay. Check your support / relatives' association for your child's illness for support and information. Daily allowance from Sjúkratryggingar if you go abroad for medical treatment. Apply for resources in the municipal social services. Make an appointment in your municipality. Apply for health care resources. Make an appointment with your GP. Apply for resources in school services. Make an appointment with a special education director or department head. It is possible to apply for a reduction in taxes, excise duty and a reduction in real estate taxes due to significant parental expenses due to chronic illness of a child (illness must have been present continuously for 3 months or more). In the tax return, you must request a reduction (concession) and fill in the application RSK 3.05. a medical certificate or confirmation from an institution where the child receives services must be accompanied. It is important to keep track of all the data that shows expenses in excess of normal living expenses. Families who have incurred large sums of money due to medical and drug costs as well as patients, occupational therapy and speech therapy may, under certain conditions, be entitled to reimbursement for high costs. The reimbursement is estimated on the basis of total expenses due to the above factors as well as drug costs with regard to the income of families or individuals. Further information on calculations can be found on TR's website under "Reimbursement due to high costs". It is important to keep track of receipts and include transcripts from pharmacies that show the family's purchases of medicines. It's good to see if it's a company that specializes in your child's illness, syndrome, or diagnosis. It is good to have e.g. a social worker and a psychologist in their local area. Members of the member association Umhyggja can be interviewed by a psychologist.

Useful links   

Tryggingastofnun

https://www.tr.is/en 

Sjúkratrygginar

https://www.sjukra.is/english 

Sjálfsbjörg

https://www.sjalfsbjorg.is/english/ 

Interpreting service

https://tulkamidstodin.is/  

Rights gardian

https://www.stjornarradid.is/gaeda-og-eftirlitsstofnun/rettindagaesla-fyrir-fatlad-folk/  

Rights gardian municipalities

https://www.stjornarradid.is/gaeda-og-eftirlitsstofnun/rettindagaesla-fyrir-fatlad-folk/#Tab0  

Ministries  of health

https://www.government.is/ministries/ministry-of-health/

Directorate of health 

https://www.landlaeknir.is/languages/polish/  

Child welfare office

https://www.bvs.is/english/about-us/  

Drug agency

https://www.ima.is/