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The Finnish Neuromuscular Disorders Association

The Finnish Neuromuscular Disorders Association. The Finnish Neuromuscular Disorders Association.

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The Finnish Neuromuscular Disorders Association

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  1. The Finnish Neuromuscular Disorders Association

  2. The Finnish Neuromuscular Disorders Association The FNDA is a national umbrella organisation of 12 local member associations. Together with the member associations, FNDA works towards equal opportunities for people with neuromuscular disorders and their families, aims to improve theirs rights in society and influence services, rehabilitation and care quality. The FNDA also spreads information and aims to raise awareness to change the attitudes in the society at large.

  3. The Finnish Neuromuscular Disorders Association • 5,3 million inhabitants in Finland • The FNDA has 2731 members • Approximately 10.000 people with neuromuscular disorders in Finland

  4. The Finnish Neuromuscular Disorders Association Approximately 10.000 people with neuromuscular disorders • Muscular dystrophies, distal myopathies, mitocondrial myopathies • Congenitalmyopathies, myotonic disorders • Myositis, myasthenias • Motoneuron diseases, neuropathies, spinal muscular atrophies

  5. The Finnish Neuromuscular Disorders Association The FNDA offers: • adaptation training and rehabilitation courses • guidance and information concerning diagnosis, rehabilitation, social services, employment • services of the Neuromuscular clinic • Physiotherapy (3 therapists) • various members’ benefits, including a member magazine ”Porras” • regional services

  6. Adaptation training and rehabilitation courses - average 30 courses in one year • duration: course can be from 6 days to 20 days • staff: physiotherapist, social worker, neurology, conversation group leader, assist personnel • financier: The Social Insurance Institution of Finland (KELA) 47%, Finland’s Slot Machine Association (Ray) 37% and Healthcare (STVOL) 13%

  7. The Finnish Neuromuscular Disorders Association Neuromuscular clinic in Turku, Finland • a patient is met by a multiprofessional team of neurologist, physiotherapist, occupational therapist, social secretary and nurse. Genetic counselling and help in work-related or studying issues is also available when needed • financed by individual payment orders from public health care or special health care

  8. The Finnish Neuromuscular Disorders Association Regional services Local associations (12) 5 regional offices around Finland: • offer support for local associations (12) • provide information • give counselling and guidance for persons with NM- disorders • keep watch on communal development in health careand social services

  9. Services in Finland Social welfare • Personal assistant • Transportation services • Interpretation and translation services • Service accommodation • Home modifications • Rehabilitation and assistive devices • Adaptation training and rehabilitation guidance • Support for informal care http://www.stm.fi/Resource.phx/eng/subjt/socwe/disab/index.htx

  10. Services in Finland The Finnish social security system is structured in line with the principles of the Nordic welfare model. The main features of the Nordic welfare state are: • the principle of universality (the right of all to social protection regardless of where they live, their profession or economic position) • a strong public sector • tax funding based on legislative rights of citizens/residents • equal treatment • a relatively high level of social benefits. http://www.stm.fi/Resource.phx/eng/subjt/socpr/index.htx

  11. Services in Finland Social Insurance Institution of Finland (Kela) All permanent residents living in Finland are issued a personal health insurance card (Kela card), which proves eligibility for social security. • National old-age pension, individual early retirement pension, unemployment pension, disability pension or rehabilitation subsidy • Disability allowance • Reimbursement rates on medicines • Medical rehabilitation www.kela.fi

  12. The Constitution of Finland, 11 June 1999, (731/1999) NB: Unofficial translation Chapter 2 - Basic rights and liberties Section 6 - Equality Everyone is equal before the law. No one shall, without an acceptable reason, be treated differently from other persons on the ground of sex, age, origin, language, religion, conviction, opinion, health, disability or other reason that concerns his or her person. Children shall be treated equally and as individuals and they shall be allowed to influence matters pertaining to themselves to a degree corresponding to their level of development. Equality of the sexes is promoted in societal activity and working life, especially in the determination of pay and the other terms of employment, as provided in more detail by an Act.

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