Markmið þeirrar rannsóknar sem hér er til umfjöllunar er að greina þá þætti sem
helst hafa áhrif á sjálfræði fólks með þroskahömlun sem þarf mikinn stuðning í
daglegu lífi. Um er að ræða viðkvæman hóp sem lítið hefur verið til umfjöllunar
í rannsóknum og því verður auk þess sjónum beint að nokkrum af þeim fjölmörgu
siðferðilegu áskorunum sem upp komu í rannsókninni. Byggt var á þátttökuathugunum
á heimilum 24 einstaklinga á aldrinum 26–66 ára. Auk þess voru tekin rýnihópaviðtöl
við 12 starfsmenn á heimilum fólksins.
Í niðurstöðum kemur fram að starfsfólk á heimilum fólksins var í lykilhlutverki
þegar kom að möguleikum þátttakenda til þess að þroska sjálfræði sitt. Viðhorf,
þekking, stuðningur starfsfólks og skipulag á heimilum fólksins höfðu afgerandi
áhrif. Á meðan einstaklingsmiðaður stuðningur efldi sjálfræði dró stuðningur sem
miðaður var út frá heildinni úr möguleikum þátttakenda til sjálfræðis og ýtti undir
stofnanamiðaða þjónustu byggða á stífum reglum, rútínu og vana.
Stuðningur sem byggðist á virðingu fyrir gildi manneskjunnar, þekkingu á mannréttindum,
lagalegum réttindum og félagslegum skilningi á fötlun jók hæfni starfsfólks
til að styðja sjálfræði þátttakenda. Vanþekking, skortur á fagfólki og mannekla
á mörgum heimilanna kom aftur á móti í veg fyrir að þátttakendur hefðu tækifæri
til að þróa sjálfræði sitt. Auk þess hafði þekking starfsfólks og næmi á tjáskiptaleiðir
fólksins mikil áhrif á möguleika þess til að tjá vilja sinn og þróa sjálfræði sitt.
Af niðurstöðum rannsóknarinnar má álykta að bæði þurfi að auka stuðning
verulega og breyta skipulagi á heimilum fólksins. Breitt bil virðist vera milli réttar
fólksins til að taka sjálfstæðar ákvarðanir, sem birtist meðal annars í lögum og
mannréttindasáttmálum, og þess veruleika sem við því blasir.
The aim of this article is to demonstrate how people with intellectual disabilities
and with high support needs make choices in their homes and daily lives and
to explore which factors influence, help or hinder them from developing and
achieving individual autonomy. People with intellectual disabilities, generally,
and people who have high support needs, more specifically, are not well represented
in disability studies. One of the reasons might be limited knowledge of
research methods in this area. Therefore, attention will also be paid to some of
the ethical and methodological challenges faced in the research.
The article draws on qualitative research with 24 people, aged 22–66 and employs
ideas of relational autonomy from the perspective of the Nordic relational
approach to disability. The relational approaches fit well with the United
Nations’ Convention on the Rights of Persons with Disabilities, which assumes
that dis-ability stems from interaction between people with impairments and
attitudinal and environmental barriers. Furthermore, the convention recognizes
the im-portance of individual autonomy and independence for disabled people.
The study began in 2011 and is scheduled to end in 2016. The data were
collected through participant observation in people’s homes and focus group
interviews with 12 staff members.
The findings of the study indicated that three main factors helped or hindered
the participants from developing and achieving individual autonomy, and in all
those factors staff played the major role. These factors are; firstly, staff
perceptions of people with intellectual disabilities; secondly, staff knowledge
and, thirdly; the structure of the participants’ homes and the support they
receive from staff.
The findings of the study indicate that the support this group of people receive
in their homes often has institutional characteristics, with each day structured
around the same routine with little variation. The staff tried to do their best but
understaffed shifts, lack of knowledge, (e.g., of the human and legal rights of
disabled people and methods such as alternative communication), and an
inade-quate social understanding of disability were the factors that hindered
people’s development and autonomy. The findings also suggest that people’s
way of making choices depends upon their relationship with their caretakers
and the quality of the support they receive. Furthermore, in cases of
appropriate support, people could develop individual autonomy and make their
own choices.
The Convention on the Rights of Persons with Disabilities specifically
recognizes the importance, for all persons with disabilities, of their individual
autonomy and independence, including the freedom to make their own choices.
The Icelandic representative signed the Convention, and even though it has not
been ratified, Icelandic legislation stated that the execution of the law should be
guided by the Convention. The findings of the study indicate that despite these
legal rights, a discrepancy remains between the legal rights and the reality
most of the parti-cipants had to face.
