Independent Living for People with Disabilities of All Ages

NNDR - 11th Research conference Reykjavík, Iceland
May 27 – 28, 2011

Adolf Ratzka, Ph D, Independent Living Institute, Stockholm, Sweden

 Independent Living principles

• We, disabled persons, are experts on our needs and their solutions.
• We are citizens -  not patients.
• As citizens we demand
• self-determination, freedom of choice and the dignity of taking risks.
• non-discrimination and inclusion - not special and exclusive solutions to our needs
• individualization of support services

Persons with disabilities are not objects of care - we are profoundly ordinary citizens. As citizens we demand access to all areas of society, all functions and positions. To safeguard these rights we need effective anti-discrimination legislation.

Even in a totally inclusive society many of us will still need individualized support services to compensate our impairments. Assistive technology, sign language interpretation or personal assistance are examples. These services must be geared to our individual needs, preferences and capabilities and must promote freedom of choice.  Since we all are different individuals, we, as the best experts on our needs, need to custom-design our services. Cash payments aka personalized budgets or direct payments are promoted by the Independent Living movement because they allow flexible and individualized demand driven solutions with superior quality compared to supply driven in-kind services.  

An example for supply driven solutions are shelter and food provided to indigent people in Europe’s historical “poor houses". Demand driven solutions are exemplified by modern pension systems where cash payments empower recipients with the purchasing power necessary to buy goods and services in the market. Demand driven solutions promote freedom of choice, competition and quality. In supply driven solutions in-kind services are delivered by monopolistic entities that have little incentive to provide quality services to their captive clientele.   

The need for self-determination is most easily grasped by persons with extensive disabilities, people who are dependent on other persons in their activities of daily life, the group that has been most often exposed to benign oppression by family, experts and society.

The Swedish Personal Assistance Act of 1994

• Money follows the user -  not the provider
• Legal entitlement regardless of state finances
• Need of assistance determines amount of payments  -  not one’s economic situation
• Needs assessment expressed in number of assistance hrs per week
• 100% coverage of the cost of assessed assistance hrs
• Recipients free to choose among public and private entities as well as “employer model"

The tax-funded Swedish National Social Security Fund (Försäkringskassan) pays monthly amounts to eligible individuals regardless of whether they live with their families or by themselves. Payments constitute a legal entitlement independent of the state’s financial situation. The amounts depend on the individual’s personal assistance need and not on the person’s or the family’s financial situation. Assistance needs are expressed in the number of assistance hours per week and not as one of several categories as, for example, in the German or Austrian Long Term Care Insurance.

For each assessed assistance hour we currently receive the amount of € 28. This budget is to cover the total cost of the average assistance hour including assistants’ competitive wages and social security fees, the cost of user’s and assistants’ training, administration and other related expenses. Use of funds has to be accounted for. Recipients are free to contract public or private for profit or not-for-profit service providers of their choice or to employ their assistants themselves. Assistants do not need any professional qualifications. Relatives are allowed to work as assistants.

Market responses

• 16,000 payment recipients
• Over 500 competing private and nearly 300 public service providers
• Demand driven development
• Diversification and specialization
• Information, training, advice and support available for users and assistants

Today 16,000 persons are entitled to payments for an average of 110 assistance hrs/week. This multi-billion market has attracted over 500 private service providers who compete with nearly 300 local government entities. Some 80,000 personal assistants (50,000 FTE) provide services. Competition among private providers has led to an increasing diversification; some companies specialize in staff with certain language and cultural skills, others cater to users with certain diagnoses such as brain injuries. Larger providers employ lawyers to assist customers in appealing decisions by the Social Security Fund in court in order to increase the assessed number of assistance hours.

Specialized organizations, websites, discussion forums, magazines and groups provide information, training, advice and support when selecting a service provider or when facing difficult situations with assistants. For example, at the Independent Living Institute we run an online service which compares service providers by relevant criteria and publishes guides and manuals on personal assistance.

Evaluation

• Personal assistance offers better quality than traditional local government services
• Private providers deliver higher quality at lower costs than public providers
• Assistance Act led to considerable savings to taxpayers
• Labor market policy instrument

The Swedish Personal Assistance Act has dramatically improved the lives of assistance users and their families, as evidenced by disabled persons’ personal accounts, government studies and academic research. Before, local government services forced us to stay home, since services were only provided there. Staff had high turn-over and we had to accept assistance from any worker within the organization even for the most intimate needs. For assistance outside the home, for study, work, events or socializing we had to rely on family or friends. The personal assistance payments made us independent from parents or spouses for such things as visiting the toilet, getting dressed or going to bed. Now, we can choose our life-style, move to another city for education or work, plan for the future.

Government studies show that private for-profit companies and assistance user cooperatives provide services with higher quality and at considerably lower costs per hour than local governments. A study commissioned by the Independent Living Institute estimated savings to Swedish taxpayers in excess of € 2,6 billion since 1994.

Other economic benefits include increased labor market participation of personal assistance users and their relatives who are now free to pursue their own lives. Among the 80,000 assistants corresponding to 50,000 full-time employees are many persons who otherwise would be unemployed such as immigrants, young adults and other people who have not established themselves on the labor market. With 50,000 jobs personal assistance has become an important labor market policy instrument - the country’s largest employer, the City of Stockholm also employs 50,000.

Personal Assistance also for older persons?

Persons 65 and older who need assistance in their daily lives receive services from the local government, under different legislation, in one’s home or in residential care facilities. They are in-kind services and do not nearly offer the quality, freedom of choice and self-determination as personal assistance. And, their costs to the taxpayer can be up to 40 per cent more expensive per hour.

The Swedish Personal Assistance Act was aimed at persons with extensive needs under 65. Persons acquiring their disability after 65 are not eligible. Individuals who already were entitled before the age of 65 continue to be so also after 65. If you get your stroke before your 65. birthday, you are in luck. If that happens after your 65. birthday, you are out of luck.

The arbitrary and discriminatory cut-off line is based on a concern for the national budget. Need for assistance with the activities of daily living is highly correlated with age and without limiting personal assistance to a certain age group, the costs to central state taxpayers who finance the Social Security Fund would have been many times higher. I am suggesting that the issue should be revisited in the light of recent developments.

Demographic challenges, financial and political constraints

• 2010: 12 persons in age group 20-64 for each person aged 85+
• 2040: 7 persons in age group 20-64 for each person aged 85+
• There is a political aim to have the public  finance most services for older persons
• Keeping today’s quality standard in 2040 requires 70% more resources
• Total tax volume is already 50 per cent of GNP and cannot be increased politically

Like other industrialized countries Sweden is undergoing dramatic demographic changes: the decreasing workforce has to support the rapidly growing non-working population. In 2010 there were 12 persons in the age group 20-64 for each person aged 85 and older. In 2040 there will only be 7 persons.

As pointed out above, many older persons need services for the activities of daily living which, in Sweden, are provided by local governments. The political aim is to finance most of these services through taxes. Studies estimate that to provide services in 2040 with the same quality as today would cost the public 70 per cent more resources.

Costs for older people’s services already make up a huge portion of municipal budgets. The total tax load in Sweden has been around 50 per cent of GNP since the 1980’s and most political parties are not prepared to raise local or state income tax levels.

How can we bridge this seemingly insurmountable financial gap? The issue was recently studied in the so-called Borg Commission Report, the result of a cooperation between Arena, the thinktank of the Swedish Social Democratic Party and Timbro, its Conservative Party counterpart. Some of my statistics and arguments are taken from the report.

Solutions for decreasing the financial gap

• Larger tax revenue through immigration and increased life-time production
• Mandatory personal saving and/or mandatory personal Long Term Care insurance
• Higher efficiency in service provision

The Borg Commission looked at several possible solutions: enlarging tax revenues through increases in immigration and longer working age, private funding complementing today’s public funding through some type of mandatory personal saving or mandatory insurance for long term care, and higher efficiency in service production.

I concentrate here on measures to improve efficiency in service delivery. As you might expect, my hypothesis is that part of the financial gap could be filled, if the current personal assistance legislation were amended to include persons of 65 and older who need this type of service for the activities of daily living.

Arguments in favor of payments for personal assistance regardless of age

• Personal assistance is more cost effective
• Future generations of older people demand more self-determination
• Regulatory framework, administrative routines and controls already in place
• Public and private actors already in the market
• Personal assistants’ role already well-known and accepted in the labor market
• Training and support of assistance users already in place

Government studies show that direct payments for the purchase of services by private personal assistance providers are more flexible and more cost effective than traditional local government in-kind services for older persons. Personal assistance users can choose among competing service providers or, if they care to, recruit, train and direct their own staff. In this way, they are able to custom-design and optimize services gaining more control over their everyday life. Typical for these solutions is that the user decides who is to work for him or her, with which tasks, where and when. Therefore, the utility of one hour of personal assistance to the user is considerably higher than that of local government services where these decisions often are made by the staff. In addition, the cost per hour of local government services is up to 40% higher than that of personal assistance. I would not be surprised if  these two factors together make personal assistance twice as useful to the user at any given expenditure level. To test this hypothesis would be an interesting research topic. These gains alone, however, will not fill the gap. Local government taxes, at today’s level, and private funding in the form of mandatory saving or a mandatory Long Term Care insurance would still be necessary. 

Much of the high productivity of personal assistance payments in comparison with in-kind local government services depends on the ability and willingness of individual users to manage their own services. How many older persons are able to do this? Already today a large part of personal assistance users is not taking full control over their services. For example, 40 per cent of the members of Sweden’s first personal assistance user cooperative are either minors or persons with cognitive or psychiatric impairments. For this group the Independent Living movement has developed solutions where another person, a relative, legal representative, a trusted personal assistant or a combination of these complements the user’s management abilities.

In the Independent Living movement we emphasize the importance of training and supporting assistance users utilizing the peer support principle. We meet in small groups, in open, non-judgmental and supporting settings, where we share the knowledge, experience and insights each of us has gathered and where we help each other to take responsibility for our assistance and our lives. These solutions could be used also by many older persons. 

When the Independent Living movement started to demand cash payments instead of in-kind services in Sweden some 30 years ago, we met great resistance. Let’s hope policymakers are willing to learn from our example and are prepared to revise their attitude towards older people. The generation born in the 1940s and later will not tolerate over-protection nor anything less than self-determination in these important services.