A SEVERELY DISABLED SCI PERSON AS EMPLOYER FOR A PERSONAL ASSISTANT

1. A SEVERELY DISABLED SCI PERSON AS EMPLOYER FOR A PERSONAL ASSISTANT Matti Koikkalainen Social worker, MA Kiljava 4.8.2009

3. Käpylä Rehabilitation Centre • provides public health care and rehabilitation for persons with SCI, TBI, stroke or polio • services and treatments based on internationally accepted methodology, interdisciplinary teamwork and patients’ own initiative

4. As an employer for a personal assistant • According to the services and assistance for the disabled act, municipalities have to provide sufficient assistant services. • Based on this act a SCI disabled person in Finland can employ personal assistants for himself or herself. • SCI persons receive direct payments from municipalities that cover all the expenses for the employer.

5. Independent living • Independent living cannot be based on charity or solely on help provided by one’s family and friends. • Social model – Medical model

6. With the personal assistant system a disabled person can gain full participation and equality in the Finnish society. • There are many good things about this system, but it also has its weaknesses. • Independency is one of the best things in this system. • The worst thing is probably the responsibility, when the disabled person has to act as an employer. • For example one of the difficulties is to find reliable and long-term assistants.

7. Spinal cord injury is a very serious disability • A person with a spinal cord injury needs a lot of rehabilitation. • In spite of receiving rehabilitation the disabled person often needs personal assistance to some extent through the rest of his/her life depending on the level of injury/disability. • Many spinal cord injured patients need a lot of assistance in order to manage activities of daily life.

8. An official relationship between employer – employee!? • It is challenging to be an employer in Finland because of a very complicated legislation. • That on the other hand guarantees the rights of both the employee and the employer. • There are many things, which are not clear for a newly disabled person acting as an employer.

9. Aim of training The purpose is to improve SCI persons’ skills as an employer. • One part of the training is to arrange information groups with lectures. • Information group sessions end with open discussion.

10. Group sessions • General discussions on central topics related to the employers’ and employees’ job descriptions, e.g. legislation. • Mostly the groups discuss special questions related to the relationship between employer and employee, for instance the fact that the assistant assists the employer in very personal (intimate) matters, for example when going to the toilet.

11. Much is discussed about the quality of the relationship between the assistant and the employer, and about how to solve conflict situations. • Also, questions about the assistant, what kind of person he or she should be, are often raised. • And how to seek and interview a new assistant. • The participants are also interested in employer lay-off related issues. • Information is given about basic rights and other legislation.

12. The renewed disabled act (1.9.2009) • To empower disabled people and give wider subjective rights for personal assistance. • Personal assistance should be provided for everyday activities, for work as well as for studies, to as great an extent as the persons with severe disabilities necessarily need. • Support for other purposes should be given, at first for at least ten hours per month and from the beginning of 2011 for at least 30 hours per month.

13. The municipalities can use several alternative ways of organising the service • the municipality compensates a person with severe disability for the costs of employing an assistant in the same way as in the present system, in which the assistant has a contractual employment relationship with the person he or she assists. • the municipality will give the person with severe disability a service voucher for purchasing assistance service. • the municipality organises the service in the form of a purchased service, through its own service production or in a contractual cooperation with one or several municipalities.

14. In this way, the law amendment will make it possible for persons with disabilities to obtain personal assistance in the form of a service – without employer obligations.

15. “Life Chances” signalled the adoption of the social model of disability ( J. Morris 2008) Disability is defined as disadvantage experienced by an individual resulting from barriers to independent living, education, employment and other opportunities that affect the life of people with impairments or ill health.

16. …and the adoption of disabled people’s definition of independent living (J.Morris 2008) “All disabled people having the same choice, control and freedom as any other citizen – at home, at work, and as members of the community. This does not necessarily mean disabled people ‘doing everything for themselves’, but it does mean that any practical assistance people need should be based on their own choices and aspirations.”

17. UN Convention on the Rights of Persons with Disabilities (2007) The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

18. Thank You! Matti Koikkalainen Email: matti.koikkalainen@invalidiliitto.fi