Omaiset ja omaishoitoAnhöriga och närståendevårdCarers and FamiliesPflegende AngehörigeFamille et proches

Erityislasten omaiset ovat usein kokopäiväisiä ja elinkautisia omaishoitajia. Heitä syrjitään aktiivisesti yhteiskunnan puolelta. Heitä hyödynnetään katkeamispisteeseen asti. Kunnat laskevat sen varaan, etteivät perheet jaksa perätä oikeuksiaan ja että omaiset paikkaavat kaikki puutteet, maksoi mitä maksoi, myös silloin kuin muut lyövät lapsen laimin.

Elinkautisille ja kokopäivätoimisille omaishoitajílle, jotka toimivat myös palkatta ja eläkettä, kuuluisi työstä palkkaa. He elävät palkatta ja kuolevat eläkettä, vaikka toimivat kokopäivätoimisesti ja ympärivuotisesti vuosikymmenten ajan. Työn arvo on > 240.000€ vuodessa kun verrataan laitoshoitoon. Omaishoitajien break-even on loppiaisena. Siitä päivästä lähtien yhteiskunta alkaa riistää vammaisen lapsen omaishoitajaa. Oikeus ja kohtuus on jossain palkkion ja laitoskustannusten välissä. Vaikeavammaisen lapsen omaishoitaja maksaa korkean hinnan terveyden menetyksenä ja pakotettuna ansionmenetetyksenä. Ehdotamme hänelle kaksinkertaista avustajan palkkaa.

Monella autistien omaishoitajalla ei ole ollut yhtään vapaapäivää jopa 10-15 vuoteen. Heiltä viedään oikeus aikuisen elämään. He maksavat kaisesta täyden hinnan ja heitä kohdellaan kuin saastunutta. Omaisen vapaa vuorokausi on usein 7-8 tuntia, ei vuorokausi. Harvalle turvataan lakisääteiset kolme vuorokautta kuukaudessa. Näitä vapaita ei myöskään saa niputtaa pidemmäksi vapaaksi lomamatkaa varten. Tänään kunnat leikkaavat jopa kokopäiväisen ja elinkautisen omaishoitajan 400 euron verollisia kuukausiansioita.

Omaisten on lähes mahdotonta sada toimia avustajina niillekin autisteille, vaikeasti puhevammaisille ja vastaaville, joiden kohdalla kunta itse on nostanut kätensä eikä mitään voi tarjota. Silti osaavista omaisista ei tehdä avustajia. Heille ei makseta palkkaa tai edes korotettua omaishoidon tukea heidän toimiessaan koulun tai lomahoidon sijaisina. Maalaisjärjen käyttö olisi tarpeen julkishallinnossa. Antakaa vammaisille heidän tarvitsemansa apu tai keksikää tilalle toimiva Suunnitelma B!Specialbarnens anhöriga är ofta detta på heltid och på livstid. Dessa anhöriga mariginaliseras aktivt från samhällets sida. De utnyttjas till bristningsgränsen. Kommunerna räknar kallt med att familjerna inte orkar processa och att de ställer upp i vått och torrt då andra överger barnet.

De anhörigvårdare som jobbar både livslångt och dygnet runt borde få ett arvode som klassas som lön. Det är en annan sak att temporärt ta hand om något (utöver lön eller med de allvarligt sjukas förhöjda bidrag) eller att utöver pensionen få samhällets erkännande klapp på huvudet, men den därtill tvingade anhöriga till ett specialbarn blir aktivt mariginaliserad utan vare sig inkomst eller pension trots ett tufft jobb 24/24, 365/365 i decennier. Arbetets värde (i Finland) är > 240.000€ per år och i jämförelse med anstaltsvårdens fakturering går lönens break-even vid trettondag. Det är då samhället börjar exploatera gratisarbetskraften. Verkligheten borde landa någonstans i mitten. Den anhöriga betalar dessutom ett högt pris i form av hälsa och av ofrivilligt utebliven inkomst. Vi föreslår dubbel asssitentlön.

Många har aldrig haft en ledig dag, inte ens på 10-15 år. De fråntas rätten till ett vuxenliv, betalar fullt pris på allt och behandlas som paria. En anhörigs lediga dygn är ofta 7-8 timmar, inte ett dygn. De tre lagstadgade dagarna i månaden får inte ens ”buntas ihop” till en veckas ledighet. Få får lediga dagar och kommunerna skär ner t o m i penningen (400€ minus skatt) för heltidsanhöriga.

Att mer eller mindre kategoriskt förbjuda anhöriga att vara assistent till autister, gravt talhandikappade och liknande barn är fel. Ofta är det kopplat ihop med att kommunen själv sträckt upp sina händer och inget kan erbjuda. Ändå får den som kan sin sak och som kan kommunicera (AKK) inte agera assistent med lön. Inte ens då de anhöriga vikarierar skolan eller lovvården, får de förhöjd betalning eller lön. Man borde dock kunna använda sunt bondförnuft inom den offentliga sektorn. Ge den funktionshindrade den hjälp den behöver eller ens en kreativ Plan B!Most carers work full time and for life as carers of their disabled children. These parents are actively mariginalised from society, by society. They work until they drop. The municipalities coldly count on the families not having the energy to process and that they fill in all the gaps when others abandon the child.

The carers who work full time, and for life, and who do not have a salary or a pension, need a salary for the work as carers. The worth of their work compared to institutional fees is > 240,000€ a year which would lead to break-even at Epiphany for the carer. On January 7, society starts exploiting the full-time carers (in Finland). There must be a solutuion between these two extremes. The carers pay a high price also in health problems and by income losses for their mandatory volunteering job. We suggest a double assistant’s pay.

Many carers have not had a day off, not even in 10-15 years. They are riddened of their right to an adult life. They pay for things in full and are treated as paria. If there is a day off, it is not 24 but 7-8 hours long. The three days off a month granted by law (but not applied in reality) may not be added together so that one might get a week off. Few get days off and municipalities even cut the 400€ taxable income of the full time, life long carers.

Often, municipalities give up even trying to find solutions and services, yet they stick to their more or less categoric ”no” to carers acting as paid assistants. Able carers, skilled in AAC and the curricula, may neither get a small salary for their work nor may they (in practice) work elsewhere. Not even when a carer is forced to act as the substitute when schools or vacation clubs are not able to do the work, is a salary or even a higher allowance paid. Ordinary common sense should be used in the public sector. Offer the disabled the services he/she needs or at least a creative Plan B!Most carers work full time and for life as carers of their disabled children. These parents are actively mariginalised from society, by society. They work until they drop. The municipalities coldly count on the families not having the energy to process and that they fill in all the gaps when others abandon the child.

The carers who work full time, and for life, and who do not have a salary or a pension, need a salary for the work as carers. The worth of their work compared to institutional fees is > 240,000€ a year which would lead to break-even at Epiphany for the carer. On January 7, society starts exploiting the full-time carers (in Finland). There must be a solutuion between these two extremes. The carers pay a high price also in health problems and by income losses for their mandatory volunteering job. We suggest a double assistant’s pay.

Many carers have not had a day off, not even in 10-15 years. They are riddened of their right to an adult life. They pay for things in full and are treated as paria. If there is a day off, it is not 24 but 7-8 hours long. The three days off a month granted by law (but not applied in reality) may not be added together so that one might get a week off. Few get days off and municipalities even cut the 400€ taxable income of the full time, life long carers.

Often, municipalities give up even trying to find solutions and services, yet they stick to their more or less categoric ”no” to carers acting as paid assistants. Able carers, skilled in AAC and the curricula, may neither get a small salary for their work nor may they (in practice) work elsewhere. Not even when a carer is forced to act as the substitute when schools or vacation clubs are not able to do the work, is a salary or even a higher allowance paid. Ordinary common sense should be used in the public sector. Offer the disabled the services he/she needs or at least a creative Plan B!Most carers work full time and for life as carers of their disabled children. These parents are actively mariginalised from society, by society. They work until they drop. The municipalities coldly count on the families not having the energy to process and that they fill in all the gaps when others abandon the child.

The carers who work full time, and for life, and who do not have a salary or a pension, need a salary for the work as carers. The worth of their work compared to institutional fees is > 240,000€ a year which would lead to break-even at Epiphany for the carer. On January 7, society starts exploiting the full-time carers (in Finland). There must be a solutuion between these two extremes. The carers pay a high price also in health problems and by income losses for their mandatory volunteering job. We suggest a double assistant’s pay.

Many carers have not had a day off, not even in 10-15 years. They are riddened of their right to an adult life. They pay for things in full and are treated as paria. If there is a day off, it is not 24 but 7-8 hours long. The three days off a month granted by law (but not applied in reality) may not be added together so that one might get a week off. Few get days off and municipalities even cut the 400€ taxable income of the full time, life long carers.

Often, municipalities give up even trying to find solutions and services, yet they stick to their more or less categoric ”no” to carers acting as paid assistants. Able carers, skilled in AAC and the curricula, may neither get a small salary for their work nor may they (in practice) work elsewhere. Not even when a carer is forced to act as the substitute when schools or vacation clubs are not able to do the work, is a salary or even a higher allowance paid. Ordinary common sense should be used in the public sector. Offer the disabled the services he/she needs or at least a creative Plan B!