Evelina Lindberg, a deaf and functionally blind resident of Piteå, Sweden, has become the center of a national debate surrounding dwindling support services for people with deafblindness. Following the Piteå municipality’s decision to withdraw her crucial support hours with a tactile sign language interpreter, Lindberg feels trapped in her own home. Her case highlights a concerning trend across Sweden, particularly in metropolitan areas, where individuals with deafblindness are increasingly losing essential support services mandated by the LSS, the Act Concerning Support and Service for Persons with Certain Functional Disabilities. This withdrawal of support, often after years of provision, leads to isolation, involuntary loneliness, and a subsequent decline in mental health for those affected.
Klas Nelfelt, chairman of the Swedish Federation of the Deafblind, confirms that Lindberg’s situation is not unique. His organization regularly receives calls from distressed members who have been denied LSS support or had existing support revoked during reassessments. He argues that the withdrawal of support ultimately creates greater costs for society as individuals with deafblindness become isolated and require more intensive care due to deteriorating mental health. Nelfelt points to a case highlighted by Göteborgs-Posten earlier this year where a man lost his LSS support after 30 years, further emphasizing the precarious situation faced by many. He criticizes municipalities for relying on family members to shoulder the responsibility of care, often leading to caregiver burnout, especially among parents of individuals with congenital deafblindness. This reliance on family support is a common practice used by municipalities to justify cutting back on allocated resources.
The impact of reduced support extends beyond the individual with deafblindness. Evelina Lindberg’s mother, Ingela, has been forced to take a leave of absence from her job to care for her daughter and struggles to envision a return to full-time employment. This, too, resonates with Nelfelt, who highlights the immense strain placed on families, particularly when municipalities expect them to fill the gap left by withdrawn professional support. This burden is especially heavy for families with members who have congenital deafblindness, requiring lifelong and intensive care. The expectation for families to provide care is not only unfair but also unsustainable, contributing to the cycle of isolation and dependence.
In Evelina’s case, the Piteå municipality argues that they are fulfilling their obligations by referring her to the region’s interpreting services, which operate under the Health and Medical Care Act. However, these services are on-demand and do not provide the consistent, integrated support necessary for daily living. Nelfelt views this as a cost-cutting tactic employed by municipalities seeking to circumvent their responsibilities under the LSS. He emphasizes that while economic pressures are understandable, prioritizing individual needs is paramount, as neglecting these needs ultimately leads to greater societal costs in the long run. The municipality’s claim of exceeding legal requirements by providing a deafblind ombudsman and a general guideline of four hours of tactile sign language support per week appears inadequate in addressing the complex and individualized needs of individuals like Evelina.
The Piteå municipality’s social services committee counters that they provide services beyond legal mandates, citing the existence of a deafblind ombudsman and a general guideline of four hours of tactile sign language support weekly. However, critics argue that this general provision does not adequately address the personalized needs of individuals like Evelina. The core issue lies in the disconnect between standardized support offerings and the real-life, fluctuating needs of people living with deafblindness. Relying on generic guidelines fails to account for the individual circumstances that dictate the level and type of support necessary for independent living. This discrepancy underscores the need for a more flexible and individualized approach to support services.
A 2022 report commissioned by the Swedish government and conducted by the National Board of Health and Welfare confirms the declining trend in support services for individuals with visual impairments, including those with deafblindness. This report, lauded by Nelfelt for its concrete findings, validates the concerns raised by advocacy groups and individuals affected by these cuts. It points to a systemic weakening of support structures and raises questions about the government’s commitment to ensuring the full participation of people with deafblindness in society. Nelfelt challenges the government to address the report’s findings and implement measures to rectify the situation. He emphasizes the fundamental right of individuals with deafblindness to live fulfilling lives on their own terms, a right that is inextricably linked to adequate support services. While Social Services Minister Camilla Waltersson Grönvall acknowledges the government’s awareness of the issue and emphasizes the importance of the LSS, her responses lack specific action plans, leaving concerns about the future of support services for the deafblind community unresolved.
