Support for Families Affected by Rare Diseases

The party programme promises a society that is always there for those who need it and that everyone should feel secure that there is support to be had. The election manifesto particularly points out that relatives, usually women, are forced to bear the responsibility when care is insufficient. Targeted and early support for families with rare diseases is precisely such a strengthening of the shared responsibility that the plan requires.

• support when there is a needdecisive»Alla ska känna sig trygga i att det finns stöd att få när vi behöver det.« (party programme ↗)“Everyone should feel secure that there is support to be had when we need it.”
• general welfare that holds»Vi vill bygga ett samhälle som alltid finns där för den som behöver det.« (party programme ↗)“We want to build a society that is always there for those who need it.”
• relieve relatives»När vården inte räcker till tvingas anhöriga, särskilt kvinnor, att ta ett allt större ansvar.« (2022 manifesto ↗)“When care is insufficient relatives, particularly women, are forced to take on an ever-larger responsibility.”
• reliable support in illness»På samma sätt ska du som lever med funktionsnedsättning kunna lita på att du får det stöd du behöver, och på att din rätt att delta i samhället på det sätt du vill inte ständigt ifrågasätts och försvåras.« (2022 manifesto ↗)“In the same way you who live with disability should be able to rely on receiving the support you need, and on the fact that your right to participate in society in the way you wish is not constantly questioned and made difficult.”

The plan takes no explicit position on what the committee actually decided — often because the committee's reason was procedural. The stance is derived and fully cited, but it does not show the party broke a commitment.

The election manifesto promises that welfare shall be there in the greatest and most difficult moments, and the party programme that welfare services are distributed according to need and that children's right to a safe upbringing applies. Targeted support measures for families affected by rare diseases, where most affected are children, follow from these commitments. The plan is prepared to strengthen the economy of families with children. The plan therefore speaks in favour of the counter-proposal's requirement.

• welfare in life's most difficult momentsdecisive»I de största och svåraste ögonblicken ska välfärden finnas där« (2022 manifesto ↗)“In the greatest and most difficult moments welfare shall be there”
• distribution according to need»välfärdstjänsterna fördelas efter behov.« (party programme ↗)“welfare services are distributed according to need.”
• child's right to safe upbringing»Alla barn ska ha rätt till en trygg uppväxt i enlighet med FN:s barnkonvention.« (party programme ↗)“All children should have the right to a safe upbringing in accordance with the UN Convention on the Rights of the Child.”
• support for families with children»Vi är beredda att stärka ekonomin för Sveriges barnfamiljer.« (2022 manifesto ↗)“We are prepared to strengthen the economy of Sweden's families with children.”

The plan takes no explicit position on what the committee actually decided — often because the committee's reason was procedural. The stance is derived and fully cited, but it does not show the party broke a commitment.

The election manifesto explicitly commits to improving support for people with rare diagnoses regardless of where in the country they live, which is exactly what the counter-proposal requires. The party programme additionally establishes the right to financial and personal support in case of serious illness and that correct support provided in time is both humane and more cost-effective for society than support that comes later. This is motivated by the fact that early social support is crucial for the entire family.

• support for rare diagnosesdecisive»förbättra stödet för personer med funktionsnedsättning och sällsynta diagnoser oavsett var du bor i landet.« (2022 manifesto ↗)“improve support for people with disabilities and rare diagnoses regardless of where you live in the country.”
• right to support for serious illness»Människor som på grund av svårare sjukdom eller funktionsnedsättning långvarigt eller livslångt inte kan försörja sig själva ska ha rätt till ekonomisk och personellt stöd från samhället.« (party programme ↗)“People who, due to serious illness or disability, cannot support themselves for a long time or for life should have the right to financial and personal support from society.”
• early interventions»Rätt stöd som sätts in i tid är både mänskligt och samhällsekonomiskt mer effektivt än stöd som kommer senare i livet.« (party programme ↗)“Correct support provided in time is both humane and more cost-effective for society than support that comes later in life.”
• individual care plan»Alla har rätt till en individuell vård med en tvärprofessionellt utformad vårdplan utifrån olika perspektiv.« (party programme ↗)“Everyone has the right to individual care with an interdisciplinary care plan based on different perspectives.”

The stance rests on the quoted commitment in the party's own documents; the actual vote deviated. Click the quote to verify it in the document.

The election manifesto promises that anyone with a disability shall get the support needed and that the state takes greater responsibility, and that public service shall be close and reliable throughout the country. The party programme puts children's rights first and makes accessibility decisive for people with disabilities. Targeted support measures to families with rare diseases, where those affected are usually children, follow from these commitments. On the ongoing dependents investigation the plan says nothing.

• support for disabilitydecisive»Du som har en funktionsnedsättning ska få det stöd du behöver, och staten ska ta ett större ansvar för att LSS fungerar.« (2022 manifesto ↗)“You who have a disability shall get the support you need, and the state shall take greater responsibility for LSS (the Support and Service for Persons with Disabilities Act) to work.”
• child-rights perspective»Samhällets aktörer ska inta individens perspektiv. Av största betydelse är då barnens rättigheter och perspektiv.« (party programme ↗)“Society's actors shall take the individual's perspective. Of greatest importance is then children's rights and perspective.”
• close and reliable service»Offentlig service ska vara nära och pålitlig i hela landet.« (2022 manifesto ↗)“Public service shall be close and reliable throughout the country.”
• full accessibility»Tillgängligheten är avgörande för människor med olika funktionsnedsättningar.« (party programme ↗)“Accessibility is decisive for people with different disabilities.”

The plan takes no explicit position on what the committee actually decided — often because the committee's reason was procedural. The stance is derived and fully cited, but it does not show the party broke a commitment.

The plan particularly points out that care opportunities for rare diagnoses shall be improved through expanded national coordination, and that public services for children with disabilities shall be designed so they provide good conditions for the whole family. Targeted support measures to families struck by rare illnesses are therefore what the plan requires. The plan furthermore wants to improve support to relatives.

• care for rare diagnosesdecisive»vårdmöjligheterna för sällsynta diagnoser« (party programme ↗)“care opportunities for rare diagnoses”
• support for whole family»funktionsnedsättning ska utformas så att de skapar goda förutsättningar för hela familjen.« (party programme ↗)“disabilities shall be designed so they create good conditions for the whole family.”
• improved relative support»Stödet till anhöriga som tar hand om sina nära behöver förbättras.« (party programme ↗)“Support to relatives who care for their loved ones needs to be improved.”
• children's needs in healthcare»Barns och ungas särskilda behov ska beaktas i all hälso- och sjukvård.« (party programme ↗)“Children's and young people's particular needs shall be taken into account in all healthcare.”

The stance rests on the quoted commitment in the party's own documents; the actual vote deviated. Click the quote to verify it in the document.

The party programme makes the family the natural and fundamental unit of society and requires the public to support when the family fails, socially and economically. Support for relatives should also be flexible and based on the individual's wishes. Families with children who have a rare, often life-threatening illness are precisely such a situation where support needs to be directed and come early, which is why the plan supports the counter-proposal's requirements.

• flexible support for relativesdecisive»Det offentligas hjälp till anhöriga ska vara flexibel« (party programme ↗)“The public's support for relatives shall be flexible”
• support when the family fails»kommunens uppgift att socialt och ekonomiskt stödja familjen« (party programme ↗)“the municipality's task to socially and economically support the family”
• the family as fundamental unit»Familjen är den naturliga och grundläggande enheten i samhället« (party programme ↗)“The family is the natural and fundamental unit of society”

The plan takes no explicit position on what the committee actually decided — often because the committee's reason was procedural. The stance is derived and fully cited, but it does not show the party broke a commitment.

The plan prioritizes seriously ill children with specially targeted resources each year for paediatric cancer care and promises a statutory care guarantee for children. The party programme establishes that no one shall be left to their fate. Targeted support for families affected by rare diseases, where most affected are children, follows from these commitments even though these specific diseases are not mentioned.

• targeted resources for sick childrendecisive»Prioritera cancervården och fördubbla stödet till barncancervården, som ska ges särskilt riktade resurser varje år« (2022 manifesto ↗)“Prioritize cancer care and double support for paediatric cancer care, which shall receive specially targeted resources each year”
• care guarantee for children»Införa en ny lagstadgad vårdgaranti för barn« (2022 manifesto ↗)“Introduce a new statutory care guarantee for children”
• no one left to their fate»hon är också garanterad att inte lämnas åt sitt öde.« (party programme ↗)“she is also guaranteed not to be left to her fate.”

The plan takes no explicit position on what the committee actually decided — often because the committee's reason was procedural. The stance is derived and fully cited, but it does not show the party broke a commitment.

The plan states that all citizens have the right to a good life and an adequate standard of living even when something is beyond their control, and that the best interests of the child should always be considered. It also wants to see increased focus and more resources on preventive work and rehabilitation and to utilize the efforts of family associations. Targeted support for families with rare diseases follows from these principles, but the plan does not address the issue directly.

• adequate standard of livingdecisive»Alla medborgare ska ha rätt till ett gott liv och en fullgod levnadsstandard« (2022 manifesto ↗)“All citizens should have the right to a good life and an adequate standard of living”
• early interventions»Se ökat fokus och mer resurser på förebyggande arbete samt rehabilitering« (2022 manifesto ↗)“See increased focus and more resources on preventive work and rehabilitation”
• the best interests of the child»Att barnets bästa alltid ska beaktas« (2022 manifesto ↗)“That the best interests of the child should always be considered”
• family members' efforts are utilized»Frivilligorganisationer som anhörigföreningar och andra volontärinsatser är viktiga« (party programme ↗)“Voluntary organizations such as family associations and other volunteer efforts are important”