Personal assistance policy features for Independent Living:

What are the important features of a national policy on personal assistance that is to promote "living independently and being included in the community" "with choices equal to others" and to enable persons with disabilities to fulfill their duties and to enjoy their rights as citizens? The presentation identifies the elements of the Swedish Personal Assistance Act of 1994 that have contributed most to the outcome of this widely acclaimed legislation.

Personal assistance policy features for Independent Living:
the Swedish Personal Assistance Act of 1994 as illustration

Keynote for workshop at World Future Council conference
"Good Policies for Persons with Disabilities"
January 22-23, 2012 Vienna

Adolf Ratzka, PhD   Independent Living Institute

Any policy for assistance with the activities of daily living for persons with extensive disabilities must comply with the following

Independent Living principles

  • Disabled people are experts on their needs        
  • We demand the same freedom of choice that other people take for granted
  • We demand the same degree of self-determination

Only services based on these principles enable users to fulfill their duties and to enjoy their  rights as citizens.

Services for assistance with the activities of daily living are of two types

Supply-driven services

  • example: residential institution
  • service provider is under contract from municipality or charity
  • fixed budget translates into fixed staff
  • staff decides which needs can be met
  • quality criteria used, if any: safe, sanitary, survival
  • users have no choice, forced to adjust their needs to needs of institution
  • users are seen and made to feel as passive helpless objects of care

Supply driven services typical for central planning economies

Demand-driven services

  • example: direct payments to assistance users for personal assistance
  • purchasing power creates market response
  • service providers compete for customers
  • competition promotes freedom of choice and quality
  • consumers custom-design their services according to individual preferences
  • consumers are assumed capable to make decisions in their own best interest.

Demand driven services are typical for market economies where users are customers.

Policies using supply-driven services do not meet Independent Living principles. One example of a policy meeting Independent Living principles is the Swedish Personal Assistance Act of 1994.

Some features of the Swedish policy

  • legal entitlement, independent of Social Security Fund’s budget
  • decisions can be appealed in administrative courts
  • assistance need expressed in number of hrs /week
  • money follows the user not the provider
  • eligibility is independent of user’s or family’s income or property
  • payments only depend on assistance user's needs of assistance
  • payments do not depend  on type of service provider
  • all costs are covered incl market wages, social insurance fees, administration
  • full accountability of how payments are spent
  • recipients free to buy services from any provider 

Cash benefits for Personal Assistance have attracted over 1,300 private and public providers.

Outcomes

  • tremendous improvement in quality of life for assistance users and their families
  • key requirement for full citizenship
  • less need for other services such as home helper, respite care, special transportation, etc
  • one hour personal assistance more useful to user than one hour home help
  • 16% of assistance users work with the help of assistants, an additional 24% could work if they had more assistance hours
  • important labor market policy instrument with over 50,000 FTE assistants
  • over 50% of costs go back to the State in form of taxes
  • better quality of life at lower costs than municipal home helper services
  • better quality of life at same costs compared to group homes
  • € 3 billion savings to Swedish taxpayers since 1994
  • greater visibility of persons with extensive disabilities in public

Cost development for Social Security Fund

Since 1994

  • costs have quadrupled
  • number of eligible persons tripled
  • average number assistance hours granted has doubled due to demographic changes
  • more persons with extensive disabilities survive longer
  • personal assistance itself prolongs lives

Costs to the Social Security Fund have to be seen in relationship to benefits and costs throughout the whole society 

The reform’s impact on central and local government budgets TOGETHER has to be studied.

Previously existing costs have been made visible and have been reallocated: 

  • from local to central government
  • from individual and family to public

Costs of personal assistance can be seen as a system of communicating vessels. If costs are decreased in one branch of the system, they will be driven up in other branches.

Communicating Vessels

Costs to

 

Social Security Fund

traditional services

disabled people and families

    central government taxes municipal taxes individuals’ lost quality of life

Cost containment instruments applied so far

  • age limit 65 for eligibility
  • municipality pays the first 20 hours/week 
  • eligibility based on minimum need of 20 hours/week for “basic needs"
  • recent assessment tool zooms in on time needed for “basic needs"
  • redefining operational definition of “basic needs"
  • assistants’  “inactive time" might soon not count as “basic needs" 
  • so-called “integrity insensitive" assistance activities might soon not count as “basic needs"

Common to these developments is an increasing medicalization of personal assistance.

Discussion

Some features are indispensable for a policy that is to promote Independent Living        

  • legal entitlement, independent of Social Security Fund’s budget
  • decisions can be appealed in administrative courts
  • assistance need expressed in number of hrs /week
  • money follows the user not the provider
  • eligibility is independent of user’s or family’s income or property
  • payments only depend on assistance user's needs of assistance
  • payments do not depend  on type of service provider
  • all costs are covered incl market wages, social insurance fees, administration
  • full accountability of how payments are spent
  • recipients free to buy services from any provider 

Yet a policy is only sustainable as long as public opinion supports it which entails that

  • the public understands the relationship between the policy’s costs and benefits 
  • all costs and all benefits are made transparent

Further reading:

  • Ratzka, Adolf  (ed). 2004  Model National Personal Assistance Policy
    www.independentliving.org/docs6/ratzka200410a.html
  •  Westberg, Kenneth et al. 2010  Personal Assistance in Sweden
    www.independentliving.org/docs1/personal-assistance-sweden.html

 

Adolf Ratzka, Ph D
Co-director
Independent Living Institute
123 47 Stockholm-Farsta
Sweden

 adolf.ratzka@independentliving.org

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