Authors: Katharina Stibrant Sunnerhagen, MD, PhD

Health Policy

Affiliations: From the Institute of Neuroscience and Physiology, University of Gothenburg, Gothenburg, Sweden.

ANALYSIS

Correspondence: All correspondence and requests for reprints should be addressed to: Katharina Stibrant Sunnerhagen, MD, PhD, Institute of Neuroscience and Physiology, University of Gothenburg, Per Dubbsgatan 14, 3rd floor, 413 45 Gothenburg, Sweden.

Reflecting the World Report on Disability

Disclosures:

ABSTRACT

Financial disclosure statements have been obtained, and no conflicts of interest have been reported by the authors or by any individuals in control of the content of this article.

Sunnerhagen KS: Reflecting the world report on disability: a report from Sweden. Am J Phys Med Rehabil 2014;93(Suppl):S42YS46.

0894-9115/14/9301(Suppl)-S42/0 American Journal of Physical Medicine & Rehabilitation Copyright * 2013 by Lippincott Williams & Wilkins DOI: 10.1097/PHM.0000000000000021

A Report from Sweden

There is a range of statistics in Sweden regarding people with functional limitations available from different authorities presenting diverging information. Although healthcare and social welfare legislations aim for equal access and treatment, surveys about unmet needs show that opportunities for rehabilitation are unequal among diagnoses and around the country and insufficient in the long-term. There is also a law granting certain supports and services to those people who are considered to be in need of having someone to speak for them. Disability-related services are tax financed with a symbolic fee. Rehabilitation is performed by not only physical and rehabilitation medicine specialists. Rehabilitation research is mainly within healthcare science but also in social science. Disability services need better coordination, and an agency has recently been founded with this responsibility. More politicians should engage in disability-related issues, and more people with disability should get into politics. Key Words:

Rehabilitation, Persons with Disability, Epidemiology, Policy

WHAT IS THE PROBLEM? Burden of Disability Statistics of Swedish people with functional limitations are available from many different sources, with different approaches and different results. The statistics are based either on use of resources or survey responses regarding perception of ability. The Swedish Agency for Disability Policy Co-ordination HANDISAM (http://www.handisam.se/english/Welcome-to-Handisam/) has been tasked by the Delegation for Human Rights in Sweden with devising indicators for a selection of human rights. In connection with the preparation of a new national strategy for disability and the initial reporting linked to the Convention on the Rights of Persons with Disabilities,1 the Swedish government has analyzed the possibilities of developing a more integrated system of monitoring disability policy. The proposal pointed out 21 authorities from various sectors of the society to have the responsibility for follow-up in their sectors. Different definitions of disability ranging from a broader perspective linked to accessibility of the society to the more narrow perspective of 24-hr support result in different figures on how many people in Sweden have a disability. These

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Am. J. Phys. Med. Rehabil. & Vol. 93 No. 1 (Suppl), January 2014 Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

figures vary from 300,000 to 1,500,000 people. The following examples show how Sweden identifies the population with disability using different definitions: & Twenty-three percent of the people aged 16Y84 yrs have a disability according to the results of the Swedish National Health Survey. This is equivalent to 1.5 million people. The survey defines disability on the basis of self-estimated ability to cope with various activities in a broad perspective. & Sixteen percent of the working-aged people (16Y64 yrs) have a disability. Among these, 525,000 persons (9%) state that they have work restrictions caused by functional limitations. Only half of the people with disabilities have a job compared with three of four in the population without disability. This has been true for years, regardless of economic fluctuations. & Four percent of the total population has a disability based on the number of people receiving support in the form of home care, residential care, personal assistance, or other practical activities. In Sweden, this is equivalent to 310,000 people. & Six percent of the total population’s people have a disability, defining disability as having community support (as above) and transportation service. This is equivalent to 528,000 people in Sweden. & Thirteen percent of the total population has a disability defined as receiving community support including transport services (as above) and financial compensation related to disability. This is equivalent to 1.09 million individuals. The oldest Swedish database linked to disability is the continuation of the BMalformation registry,[ which started in 1964 as a result of the thalidomide disaster. This registry has evolved over time, and in April 2007, the name was changed to BThe register for surveillance of birth defects and chromosomal abnormalities.[2 There is also a national quality database, WebRehab Sweden,3 owned by the Swedish Association of Local Authorities and Regions (http://english.skl.se/) and run in cooperation with the Society for Rehabilitation Medicine, covering all hospitals where rehabilitation is given. The aim of WebRehab Sweden is to support high and consistent quality of rehabilitation throughout Sweden. This will be achieved by (1) improving quality in the rehabilitation process, (2) better use of limited resources, (3) enhancing the awareness of the International Classification of Functioning, Disability and Health (ICF) model, (4) supporting the participating units in developing their rehabilitation process, and (5) making comparison www.ajpmr.com

between units possible. The register also aims to gather knowledge of rare conditions and to have data that can be used for research. This source can be used to explore hospital-based rehabilitation for people with disability. Surveys from BStatistics Sweden[4 provide information about living conditions among various groups in Swedish society. This information is gathered through telephone interviews with a sample of the Swedish population, 16 yrs or older. Data are available since 1974, and these are gathered at planned intervals (approximately 2Y4 yrs in between). One part of the population participating in the interviews is randomly chosen each time, and another part is from the Bolder[ material, which allows longitudinal follow-up. The latest survey had a response rate of more than 60%. The areas covered included housing, finances, health, leisure, civic activities, social relationships, employment, and security. Because some of the issues are common to other European Union (EU) country surveys, it is possible to make comparisons with other EU nations. The National Board of Health and Welfare (http://www.socialstyrelsen.se/english) collects statistics on the municipal services according to the Law of Social Services and the Health Care Act for people with functional limitations and for the elderly. People younger than 65 yrs who receive support according to these laws are counted as people with limitations; and those older than 65 yrs, as elderly. There are also statistics according to the use of municipal resources because of the BLaw of Support and Service to Certain Functional Limited.[ This last law gives certain rights to those who are covered by the law. The available statistics provide information about the number of people up to 64 yrs old who have been given support according to this law on the basis of physical or mental functional limitations, divided into types of support. The latest available data are from November 2011, and it is updated yearly. All these reports are publically available, some in printed format but all through the Internet without cost. The National Board of Health and Welfare report BStill un-equal[5 from 2010 explores the living conditions for grown-up people with functional limitations. The results show that there are considerable differences between the investigated group (57,500 people) and the general population. In all the examined areas, except for housing conditions, the living conditions for those with functional limitations are lower. The Swedish Social Insurance Agency (http:// www.forsakringskassan.se/sprak/eng) covers everyone who lives or works in Sweden. It provides financial A Report from Sweden

Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

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protection for families and children, for people with a disability, work injury, illness, and older people. Because of the Swedish membership in the EU, a person living in Sweden may also be eligible for social insurance benefits in other EU member states if the person or anyone in the family resides or works in any other EU member states. The Swedish Social Insurance Agency deals with areas such as personal assistance (more than a certain number of hours per week), support for car adaptation, support for increased costs as a result of disability, economic support for families with children with disability (up to 16 yrs of age) to cover extra costs, and a possible loss of income as a result of the care for a child with disability at home. These data are analyzed yearly and are available on the Internet. For instance, there are longitudinal data available about the number of persons in the country who have been approved for support according to the Law of Support and Service to Certain Functional Limited. What can be noted is that the number of people receiving this support has not increased since 1994, but the numbers of weekly hours in need of support have increased. Information on barriers and facilitators in the environment is not that easy to find. A recently published resource is the Accessibility database (TD) (http://epi.vgregion.se/sv/TD/), where it is possible to find information about the physical accessibility of stores and restaurants, within public service as well as outdoor areas and other destinations. The information presented is based on five conditions: & & & & &

Vision problems Hearing problems Mobility problems Allergy problems related to certain substances Processing, interpreting, and communicating information problems

This database started as a regional project but has grown and includes more and more areas of Sweden. The objective is that each destination or place should be described in such a clear manner that one can easily decide whether the location can be visited. Traveling with a disability is not always easy and often requires planning. In Europe, the European Network for Accessible Tourism (http:// www.accessibletourism.org/) was established as a project-based initiative of nine sponsoring organizations in six EU member states (including Sweden) in January 2006. The network provides information regarding, for example, accessible European cities, links to countries all over the world, and accessibility information on Information Technology (IT).

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Sunnerhagen

Need for Rehabilitation A recent update of needs and demands shows the following: The treatment and the autonomy vary, and the individual is not always allowed to decide who gives support and during what time the support is given. The somatic care for people with mental disabilities is unequal. For instance, the diagnosis of breast cancer in this group is delayed, the risk for amputation as a result of diabetes is higher, and the risk for death within 6 mos after myocardial infarct is higher. Having a functional limitation and needing help are costly. Even if this is tax subsidized, the costs vary in different parts of the country. The share of persons older than 65 yrs who are allowed a personal assistant is increasing and should lead to a chance for increased participation and an autonomous life even for persons aging with a disability. The Swedish Riks-Stroke quality database6 (which covers 95% of all strokes in Sweden per year) reports that 50% of the stroke survivors younger than 75 yrs claim unmet needs for rehabilitation after hospital discharge. Moreover, 25% have unmet needs regarding support for daily activities in their homes. The Association for Neurologically Handicapped has conducted surveys among their members, and more than 50% stated that their needs for recurrent rehabilitation are not met. In addition, as far as having pain, approximately 50% of their members have treatment and rehabilitation needs that are not taken care of.

WHAT HAS BEEN DONE? Policies and Legislation The Health Care Act is a framework law, which states the main objectives of health care. The goal of the law is good health and care on equal terms to all and refers to medical prevention, investigation, and treatment of diseases and injuries including rehabilitation. The Law of Social Services is also a framework law, which states the main objectives of social services in Sweden. The basic goal is economic and social security for the persons living in the country. By this, it is meant that everyone should be able to have a financially acceptable standard of living. This also implies support and care if a person gets physically or mentally ill or if a person is, for some other reason, not capable of taking care of himself/ herself.

Am. J. Phys. Med. Rehabil. & Vol. 93 No. 1 (Suppl), January 2014

Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

The Law of Support and Service to Certain Functional Limited gives certain rights to those who are covered by the law. These are, firstly, persons with learning disabilities and people with autism or developmental disorders; secondly, persons with significant and cognitive limitations after a brain injury in adulthood caused by external violence or physical illness; and, thirdly, persons with other major and permanent physical or mental disability that is clearly not a result of normal aging, with significant difficulties in daily life, and with extensive need for support and service. Support by this law can be related to personal assistances, escort service, contact person, relief service, short stay elsewhere, short time support for adolescents older than 12 yrs after school, stay in another home for a short period (for children with special needs), residential care for adults or other special adapted housing, daily activities for people of working age who are not gainfully employed and not educated themselves, and nursing.

Funding Mechanism in Rehabilitation Rehabilitation is part of the healthcare system, which is tax financed. The person pays a symbolic fee for treatment, over a certain cost per year (which usually corresponds to 20 visits to occupational therapy or physical therapy or 10 visits to a specialist in physical and rehabilitation medicine). There is no fee for the remaining 12 mos. All treatments for persons 20 yrs or younger are free. In Sweden, private insurance for health care and rehabilitation is possible but very uncommon.

rehabilitation or contact on a one-to-one basis with a professional. The rehabilitation can occur in the hospital, at the community care level, or in the home setting. There are also free-standing rehabilitation facilities that have service agreements with the healthcare system. These usually provide recurrent rehabilitation periods that the persons can apply for within the tax finances healthcare system. These facilities are usually targeted toward certain conditions. Most of them are in Sweden, but there are also facilities in other countries where the ordinary rehabilitation is complemented with Bclimate care.[

Affordable Technology Adaptive housing is tax subsidized and available after an investigation by a district occupational therapist. The same goes for mobility aids such as crutches, walkers, wheelchairs, and electrical wheelchairs. There is also a possibility for special beds, mattresses, and others if there are special needs. Communication devices are free of costs, including, for instance, talking computers or voice generators. Ordinary glasses have to be paid for, but special glasses for extreme low vision or visual field defects are free of costs as well as adaptation in the house as a result of low vision. For hearing aids, there is a symbolic cost, and alterations in the house such as extra light for the telephone and the fire alarm or support for the hearing aid in a pillow by the television are free. Small adaptive devices have to be bought in stores and paid full price for.

Research and Evidence-Based Practice Human Resources There are physical and rehabilitation medicine specialists involved in rehabilitation but also rheumatologists (who deliver rehabilitation for those in need with rheumatoid diseases), neuropediatricians (responsible for children with rehabilitation needs), geriatricians (responsible for the needs of the very old in the hospitals), family physicians (responsible for those in nursing homes), psychiatrists, audiologists, and ophthalmologists. In all areas of the country, there are occupational therapists working along with physical therapists and nurses. There are also psychologists (including neuropsychologists), speech and language therapists, and social workers involved.

The Swedish Science Council (http://www.vr. se/inenglish) has an application group for health science research that includes rehabilitation. The Swedish council for Working Life and Social Research (http://www.forte.se/english) is more involved in disability research. The National Board of Health and Welfare (which government authority dates back to 1813) has the responsibility to ensure that the practice delivered within health care and social care is based on the principle of equal value, on research, and on the highest level of evidence. This gives every person the right to complain to a free-standing body if this is not the case.

WHAT SHOULD BE DONE? Service Delivery Most of the service delivery is performed within the ordinary healthcare system as either inpatient or outpatient services. Outpatient care can be day www.ajpmr.com

Disability-related data are available in different databases in Sweden. However, the data are gathered by different authorities and in different manners and the purpose of the gathering is not always clear. A Report from Sweden

Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

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It is difficult to navigate because the information is spread out. There is a need for coordination in the area for both the citizen and the legislator as well as for research purposes. Recently, the HANDISAM has been stated as an agency that coordinates, promotes, and monitors disability policy. Even if the laws are aiming for inclusion, a lot of unsolved problems remain. According to the report BUn-necessary un-health; the health status for disabled persons[7 from 2008, the risk for perceived ill health is increased 10-fold if the person has a disability. The persons with disability have a lower level of education compared with that of the general population. There are also significantly fewer persons with disability who work professionally compared with the general population. These social gaps and lower income are among the risk factors of lower health in a public health perspective. Some studies in different areas of Sweden have shown that persons with intellectual disabilities have less healthy eating habits than those of the general population. This can lead to overweight, which is another risk factor of ill health. The knowledge of healthy food and the discussion on eating habits in these areas not only are of importance but also impose an ethical dilemma. Who is one person to decide what another person is allowed to eat or must eat? The focus has been on cooking classes and increased focus on fitness, for instance, active recruitment of persons with intellectual disabilities to fitness races.

There is a need for more politicians to engage in disability-related issues and also for more people with disability to be involved in politics. The inclusive schooling has made persons with disability more visual in the society and in the streets. However, there are still few persons with disability shown on television, although in the last season, there have been some shows with persons with disability as producers and on screen such as BCP-magazine[; the reality show BSomewhere in Ko¨ping[ about a group housing for persons with learning disabilities; and BAgainst All Odds,[ an adventure tour with persons with impairment aiming to get everyone to finish the trip. All these have made an impact and caused discussion in the radio, in television, in newspapers, and on the Web. Public health is one of nine priority areas for the government’s new approach to disability policy. Since this year, the Institute of Public Health has been commissioned to continuously monitor a number of determinants with respect to persons with disabilities. Sunnerhagen

ACKNOWLEDGMENTS

The author thanks Henrik Nordin, statistical coordinator, the National Board of Health and Welfare, and Arvid Linde´n, head of Division of Analysis, HANDISAM, for their help in finding information about the situation in Sweden. REFERENCES

CONCLUSIONS

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The monitoring shall include self-rated health, social participation and economic conditions of people with disabilities, health of parents with disabilities and access to work of parents of children with disabilities, worries about getting out of work, sedentary leisure, obesity, and smoking. The World Report on Disability8 has received little attention in Sweden so far. By using Google and limiting the search to pages from Sweden, information on where the report can be bought is available. The information that the Swedish Institute of Assistive Technology has participated in the preparation of the texts about assistive technology for persons with disabilities within the institute’s cooperation with Disability and Rehabilitation Unit at the World Health Organization is available on their Website. There has been one letter to the editor of the Swedish Medical Journal calling for more interest for the report and one report to the Swedish Association of Rehabilitation Medicine about the International Society of Physical and Rehabilitation Medicine (ISPRM) meeting regarding the World Report on Disability in Sa˜o Paulo.

1. UN: Convention on the rights of persons with disabilities. 2006. Available at: http://www.un.org/disabilities/ convention/conventionfull.shtml. Accessed September 9, 2013 2. Socialstyrelsen: O¨vervakning av fosterskador och kromosomavvikelser. Socialstyrelsen (National Board of Health and Welfare). Accessed September 9, 2013 3. WebRehabSweden. Folkha¨lsoinstitutet. Available at: http:// www.ucr.uu.se/webrehab/ 4. SCB: Statistics Sweden. 2013. Available at: http:// www.scb.se/default____2154.aspx. Accessed September 9, 2013 5. Socialstyrelsen: Alltja¨mt oja¨mlikt BStill -un-equal[. Socialstyrelsen (National Board of Health and Welfare). 2010. Accessed September 9, 2013 6. Riks-Stroke A˚rsapport 2011. Available at http://www .riks-stroke.org/?content=analyser. Accessed September 9, 2013 7. Arnhof Y: Ono¨dig oha¨lsa BUn-necessary un-health[. Folkha¨lsoinstitutet, WHO Library Cataloguing-inPublication Data, 2008 8. World Bank and World Health Organization: World Report on Disability. 2012

Am. J. Phys. Med. Rehabil. & Vol. 93 No. 1 (Suppl), January 2014

Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

Reflecting the World Report on Disability: a report from Sweden.

There is a range of statistics in Sweden regarding people with functional limitations available from different authorities presenting diverging inform...
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