Independent living for severely disabled people

The Danish Model - Law on Social Service §77

by Stig Langvad

It is possible for severely disabled persons, who are living - or are planning to live - on their own in a house/flat, to receive an amount of money from the local municipality to pay the expenses to employ some personal assistants, who assist the person with, for example:

• personal care
• housekeeping
• surveillance according to physical needs
• accompanying to social activities in a broad sense
• accompanying to educational activities
• accompanying to organizational activities
• accompanying to employment activities (except strictly job related functions)

The legal basis is the Social Law §77

The purpose of the independent living arrangement is to give severely disabled persons the possibility of:

• choosing their own life
• living on their own - outside social institutions etc.
• participating in normal functions of life
• living a life as close as possible to the life of "normal" people and on equal terms.

It is demanded, that the disabled persons are able to fulfill the obligations as an employer in terms of:

• instructing the personal assistants
• planning the work schedule
• secure the right payment of wages

They also have to live a (very) active life, which they can not do without the support of the personal assistants. An active life can be, where the disabled person

• is studying
• is working
• is engaged in organizational activities (political or user groups)

Some of the persons, who are given an independent living arrangement are ex. spinal cord injured with a high cervical lesion or people with multiple sclerosis in late stages. It is necessary, that the persons - without assistance - are physically unable to perform even the most common daily functions, i.e.:

• getting dressed
• going to the toilet
• getting washed
• eating

It is essential that the disabled person is unable to get the proper and needed support from or through the regular home care system - mainly because:

• their needs are very specific and only can be performed by personal assistants with a close knowledge of the disabled person
• their active daily living has a character, that demands a very high degree of flexibility in planing the work schedule.

Something, that the home care system can not supply

The independent living arrangement is not dependent on the financial situation (income, etc.) of the disabled person - or the family. The disabled person does not have to pay any part of the wages that the personal assistants receive. An independent living arrangement can cover all 24 hours of the day - and all 7 days a week. Regardless of Christmas, Easter etc. The amount of hours that the disabled person can use for personal assistance are decided in a meeting, where all relevant persons participate. The decision are based on:

• what does the disabled person do (or want to do)
• what does the disabled person need
• what can what / does the disabled person do by him- or herself

It is essential that it is not possible to place the responsibility on the family to fulfill the needs of the disabled person. We see many independent living arrangements with 24 hours per day - about 1/3 of them all. The average number of hours per day is probably about 15 , 18. The wages that the personal assistants receive for the job is on the same level as other people working in the social area. The municipality has an obligation to follow up on and adjust the independent living arrangement once a year. The municipality also has to make sure, that the disabled person can give the adequate information and instructions to the personal assistants. It is possible to accompany the amount of money for wages with some money which are to be used to cover extra expenses - tickets, hotel, flight tickets etc. It is the municipality that pays, but they get 50% of the expenses back from the state for all disabled persons with a personal assistant arrangement between 18 and 67 years. An independent living arrangement is free , regardless of income, social background, insurance etc. All is paid by the public. The creation of the independent living model in Denmark is a unique history of how local politicians in a major city, social counselors and severely disabled persons joined in creating something which had not yet been seen anywhere.

• It started before 1976, but was exclusively for polio-people using respirators
• It became a possibility for more people 1976
• It became law around 1982

Today there are about 500 independent living arrangements in Denmark (100 per million inhabitants) and the total costs are about 225 - 250 million Danish kroner (approximately 1/6 of $1US) per year. During these years the Danish organizations for disabled people have put a lot of effort into maintaining and improving the independent living model. It seems as if there are no problems with the independent living model. It is not correct. The problems are ex.:

• It is difficult to bring the personal assistant along when you are in a hospital where they can not give you the personal care, that you need, and where they do not know your needs as your personal assistants do

• It is difficult to bring the personal assistant along when you are on a holiday outside the country, that last more than a few weeks

• It can be difficult to move from one municipality to another because you do not know the level of social service in the new municipality

• It can be difficult to be the employee with the responsibility for hiring, planning, education etc. Attendants. You need psychological strength and experience.

Despite the problems , it is a great opportunity. And yes , we pay a lot in taxes as Danes, but we get a lot back for free, ex.

• Free school
• Free treatment
• Free libraries
• Free high school
• Free university
• Free home care
• Free technical aid (almost)
• Free old age pension