Challenges and family support in accessing Act concerning Support and Service for Persons with Certain Functional Impairments (LSS): the case of Afghan disabled migrants in Sweden

Introduction

This article summarises a thesis that explores the significant challenges faced by Afghan migrants with disabilities in accessing support services in Sweden, particularly under the Act Concerning Support and Service for Persons with Certain Functional Impairments (LSS). Despite Sweden's reputation as a comprehensive welfare state committed to equality and inclusion, the study reveals that Afghan disabled migrants often remain marginalised, struggling with limited access, unfamiliar systems, and cultural disconnects.

The research aims to identify institutional and policy-level gaps in LSS service delivery, highlight the crucial, yet often overlooked, role of family support in overcoming these barriers, and provide recommendations for more inclusive and culturally sensitive policies. Displacement, trauma, and disability combine to strengthen vulnerabilities, particularly for those disconnected from family and community networks.

Key research questions include:

• What institutional, social, and cultural barriers do Afghan disabled migrants face in accessing disability-related support under LSS, and how do language, stigma, and unequal service delivery contribute?
• How do Afghan families support their disabled relatives in navigating these services, and what challenges do they experience?
• How are families involved in disability support across municipalities, and to what extent do cultural factors shape caregiving roles and family dynamics?

Relevance to Human Rights and Multi-Level Governance

The study approaches the issue from a Human Rights and Multi-Level Governance perspective (MLG). It asserts that social welfare and disability support are fundamental human rights, recognised in the UN Convention on the Rights of Persons with Disabilities (CRPD), especially Article 19 (independent living and community inclusion) and Article 23 (family life and caregiver support). Sweden’s disability policy aligns with these principles, aiming for full participation and equality.

The 2030 Agenda for Sustainable Development also reinforces this obligation. In particular, SDG 10 (Reduced Inequalities) and SDG 11 (Sustainable Cities and Communities) call on states to build inclusive systems that address the needs of all, especially those of marginalised groups like disabled migrants.

However, MLG theory explains that while national laws like LSS set the framework, municipalities and regional councils deliver services. This decentralisation leads to variations in provision, with some municipalities adopting restrictive rules that undermine universality and equality, leaving Afghan disabled migrants facing cultural misunderstandings, administrative rejections, and delays.

Methodology

The research used a qualitative, interpretive, and human rights-based approach, prioritising the voices of underrepresented individuals. Seven semi-structured interviews were conducted: five with Afghan migrants (two men with disability, one woman with disability, and two female caregivers) and two with Swedish social professionals in Stockholm municipality. Recruitment difficulties among Afghan women with disabilities reflect deeper cultural issues, including stigma and silence. The predominance of women in caregiver roles highlights the disproportionate burden on female relatives.

Interviews, conducted between March and May 2025 in Dari, Farsi, or English, were recorded, transcribed, and analysed thematically. Recurring themes included lack of accessible information, linguistic and digital exclusion, and family stress. Analysis drew on the Rights based approach, Social exclusion theory, Welfare state theory, Critical disability theory, and Intersectionality.

Ethical safeguards included informed consent, confidentiality, and pseudonyms. The researcher, sharing migration and cultural backgrounds with participants, used reflexivity to minimise bias. Limitations included small sample size and gender imbalance among caregivers, but trustworthiness was maintained through credibility, transferability, dependability, and confirmability.

Theoretical underpinnings

1. Rights based approach (RBA): Grounds the analysis in CRPD principles, viewing persons with disabilities as rights-holders and institutions as duty-bearers responsible for removing structural barriers, shifting responsibility for inclusion from the individual to the system. When migrants are unaware of their rights or cannot access support in their language, the rights-based approach shows that their rights are not fully respected.
2. Social exclusion theory: Explains how overlapping exclusions in language, culture, bureaucracy, and limited knowledge of support systems prevent Afghan migrants with disabilities from full participation in society. Such exclusions operate across social, cultural, and institutional levels, creating isolation and restricting equal access to rights and opportunities.
3. Welfare state theory: Welfare state theory examines how social protections such as healthcare, education, housing, and disability support are organised and distributed. Sweden is often described as a ‘social democratic welfare state,’ committed to universalism and equality. Yet in practice, marginalised groups such as migrants and persons with disabilities may still face unequal access, especially when decentralised services allow municipalities to interpret rules differently, creating variations in support across the country.
4. Critical disability theory (CDT): Views disability as a social, cultural, and political construct shaped by power and dominant norms rather than only by medical conditions. It critiques standardised service models that often ignore cultural diversity and migration histories, leading to forms of exclusion when families’ lived experiences or caregiving roles do not fit institutional expectations. In this study, CDT helps to show how Swedish disability services may unintentionally overlook Afghan migrants with disabilities and their families, leaving their specific needs unrecognised within a universalistic framework.
5. Intersectionality theory: Shows how different aspects of identity interact to create unique and compounded forms of disadvantage. It explains that disability cannot be studied in isolation but must be understood together with migration status, ethnicity, gender, language, and socio-economic position. In this study, Afghan migrants with disabilities often experience multiple layers of exclusion, for example when Afghan women caregivers face the combined challenges of gender inequality, limited education, financial strain, and heavy caregiving roles. Intersectionality therefore helps to reveal why some families fall through the gaps of Sweden’s disability system, which is designed around individual rights rather than collective or family-based support. 

Together, these frameworks reveal how systemic structures and personal identities interact to perpetuate exclusion, showing that barriers are produced not only through formal policies and institutional practices but also through cultural norms, social roles, and intersecting disadvantages that shape the lived experiences of Afghan migrants with disabilities.

Historical and policy context

Sweden’s disability policy shifted from needs-based under the Social Services Act (SoL) to rights-oriented with the LSS Act in 1994. LSS entitles individuals with significant long-term disabilities to services promoting independence and equality, such as personal assistance (PA), counselling, and supported housing. Responsibility for PA is shared between municipalities and Försäkringskassan (Social Insurance Agency).

The LSS, based on the biopsychosocial model of disability, aligns with Article 19 CRPD, which recognises the right of persons with disabilities to live independently and be included in the community, with access to the support needed for full participation. Yet, municipal discretion creates inequalities, with restrictive interpretations limiting access. The Independent Living movement, led by Adolf Ratzka, influenced LSS by promoting self-determination, direct payments, and deinstitutionalisation.

Disability and migration

Migrants with disability face heightened vulnerability, including isolation, language barriers, and limited service access. Mental health needs, often linked to pre- and post-migration trauma, are compounded by the absence of disaggregated data, leaving migrants invisible in statistics and policy.

Eurostat (2023) shows higher disability prevalence among women (29.2% EU; 25.7% Sweden) than men (24.3% EU; 19.6% Sweden). In Sweden (2022), employment among people with disabilities was 52%, compared to 81% for the non-disabled. OECD (2022) data reveals similar employment gaps globally.

Afghan immigration context

According to Andersson and Wadensjö (2024), decades of war, persecution (especially of Hazaras), and poverty have shaped Afghan migration. Afghanistan has one of the highest disability rates globally (2019: ~80% of adults), caused by conflict injuries, landmines, poor healthcare, and genetic conditions linked to consanguineous marriage. Women and rural residents face the greatest barriers. Despite CRPD ratification in 2012, Afghanistan remains largely inaccessible, with conditions worsening under the Taliban since 2021.

By 2022, about 57,900 Afghan-born people lived in Sweden, many young and with limited formal education, especially women. A lack of disability data by country of origin compounds invisibility. Disabilities like polio or hereditary conditions often remain undiagnosed before migration, creating barriers in Sweden where formal medical assessments are required.

Key findings

Information and awareness gaps: Participants repeatedly stressed that they first learned about LSS and other disability services through friends, churches, or NGOs rather than directly from authorities. This reliance on informal sources shows the absence of clear, accessible outreach. The system often expects migrants to already know where to look for support, which delays access and creates indirect exclusion, especially for those with limited Swedish or digital skills.

Language and communication barriers: Limited proficiency in Swedish was described as one of the biggest challenges. Even when translators were present, the quality was not always sufficient for complex issues. As a result, family members often acted as interpreters without training. These language barriers not only blocked access to services but also deepened isolation and reduced the chance of integration.

Access and bureaucratic challenges: Participants described the application process for LSS and related services as complex, unclear, and slow. Long waiting times were common, and some reported rejections without proper explanation. A Swedish medical diagnosis was essential for access, but many migrants lacked the necessary documents from their countries of origin, making the process even harder, particularly for psychological or neurodevelopmental conditions.

Service limitations and quality issues: Strict eligibility rules sometimes led to rejections even in cases of obvious need. Waiting periods could extend up to a year, and several participants highlighted concerns about untrained staff and the absence of psychosocial or emotional support. Access also depended on legal status, leaving those without asylum decisions or ID cards excluded.

Social inclusion, stigma, and discrimination: Although Sweden was generally seen as more accepting than Afghanistan, Iran, or Pakistan, indirect discrimination still existed. Some participants felt distrusted by authorities or treated differently because of their background. Stigma surrounding disability in their home countries, particularly mental and intellectual impairments, also delayed help-seeking and contributed to isolation.

Employment challenges: Finding suitable jobs remained a serious problem. Participants faced repeated rejections, with limited opportunities for those with physical or sensory impairments. Basic language courses (SFI) did not provide tailored guidance, and many felt that disability was not adequately addressed in employment support.

Caregiver burden: Families, especially women carried the main responsibility for daily care, from medication and personal care to emotional support and advocacy. This role, while vital, is largely invisible in Sweden’s individual-focused welfare model. Some families reported that having a caregiver reduced their chances of receiving formal assistance, despite no legal requirement for family members to provide such care. Emotional strain, financial hardship, and risk of burnout were common.

Insights from professionals: Professionals confirmed that a Swedish medical diagnosis is central to accessing LSS, but acknowledged that the process is slow and resource-intensive. They noted that high costs of services like personal assistance often led to stricter assessments and reduced hours. Both also observed that migrants frequently lacked awareness of services and struggled with digital systems. Finally, they admitted that services tend to operate on universal assumptions, often overlooking cultural caregiving practices. Trust gaps were also identified: migrants sometimes suspected hidden motives, while professionals acknowledged the risk of unconscious bias.

Conclusion

Despite Sweden’s strong legal framework, gaps between entitlements and lived realities remain for Afghan migrants with disabilities. Barriers include unclear information, language and digital exclusion, complex bureaucracy, long waits, rigid medical diagnosis requirements, and inconsistent service quality across municipalities. Stigma, mistrust, and subtle discrimination further hinder integration.

Families, especially women, carry a disproportionate caregiving load, often without recognition or formal support. This tension between Sweden’s individualistic welfare approach and Afghan collective caregiving norms exacerbates strain on households.

The combined use of RBA, Social Exclusion, Welfare State, CDT, and Intersectionality frameworks shows these barriers are systemic. Migrants’ absence from disability data hinders tailored service planning and policy engagement.

Creating a more inclusive support system requires not only policy change but also a shift in perspective. Services like LSS should recognize the vital role of families, cultural values, and personal experiences. Clearer communication, tailored outreach, and meaningful support for caregivers are essential steps. By listening to the voices of migrants with disabilities and their families, Sweden can build a welfare system that truly includes everyone in everyday practice.