Through the agency of: PERSONAL ASSISTANCE IN SWEDEN July 2010 AUTHOR: Kenneth Westberg (ILI) TRANSLATION: Susanne Berg(ILI) Davy Gaeremynck (ILI) Eva Menschaert (BOL-BUDIV) Maja Wojcik (Expertise Centre Independent Living) 1 Index 1. Introduction.......................................................................................................................... 6 2. General Introduction to the Reform ....................................................................................... 7 2.1. Who is Eligible to Receive Personal Assistance?...................................................................... 7 2.2. How is Personal Assistance Provided? ..................................................................................... 8 2.3. What is the Size of the Assistance Allowance/Direct Payment for Assistance? What are the Required Accounting Methods? .............................................................................................. 9 2.4. How many Individuals Receive Assistance and which Providers do they Choose? ............... 10 2.5. What are the Antecedents to Personal Assistance in Sweden? How was it Introduced? ..... 11 2.6. What were the Arguments Pro and Contra Personal Assistance? ......................................... 13 2.7. How did the Established Disability Organizations Teact to the Introduction of Personal Assistance? ............................................................................................................................. 15 2.8. Which Factors were Decisive for Personal Assistance to Become a Legalized Social Right? 17 2.9. The Impact of the Enactment of LSS and LASS on Institutionalization .................................. 18 2.10. Did this Legislation in any Way Influence the Employment Rate of Disabled Persons? ........ 19 2.11. What Are the Findings of Research and Evaluation of the Legislation? ................................ 20 3. Needs assessment ............................................................................................................... 22 3.1. Who Carries out the Assessment? ......................................................................................... 22 3.2. Which Assessment Tool is used in Sweden? What Methods and Questionnaires are Applied? ............................................................................................................................................... 23 3.3. To what Extent is the Assessment Done by Self-evaluation? ................................................ 24 3.4. Is the Assessment Open and Voluntary? Can a Decision on Personal Assistance be Appealed? .............................................................................................................................. 24 3.5. Are Living Circumstances and the Possibility of Receiving Informal Care taken into Account? ............................................................................................................................................... 25 3.6. How is the Quality of the Assessment Guaranteed? ............................................................. 26 3.7. How is the Size of the Assistance Allowance/Direct Payment for Personal Assistance Decided? ................................................................................................................................ 26 4. Issues and Responsibilities Concerning Employment ............................................................ 29 4.1. Who Can Act as Employer for Personal Assistants Provided under LASS and LSS? ............... 29 4.2. What Responsibilities are Generally Included in Employership in Sweden? ......................... 30 4.3. What Types of Employment Exist within the Personal Assistance Sector? ........................... 32 4.4. What is the Regulation of Working Hours for the Different Types of Employment? ............ 33 4.5. How Can Providers or Individual Assistance Users Acting as Employers Use Assistance Allowance and Direct Payment for Personal Assistance Services According to Skatteverket [Swedish Tax Authority]? ....................................................................................................... 33 2 4.6. How do Providers/Individual Assistance Users Acting as Employers have to Account for Assistance Allowance and Direct Payment for Personal Assistance Services? ...................... 34 4.7. What are the Rules for Users Employing their Own Personal Assistants? ............................ 35 4.8. What are the Pros and Cons of Employing your Own Assistants? ......................................... 36 4.9. What are the Rules for Cooperatives Acting as Employers? ................................................. 36 4.10. What are the Responsibilities of a Supervisor/Work Leader? What Types of Support can be Available for Assistance Users Acting as Supervisors? .......................................................... 36 4.11. Can Assistance Users Act as Supervisors of their Assistants within Municipalities and Private Companies? ............................................................................................................................ 37 4.12. What Specific Responsibilities can Pose a Problem when Delegating Supervision/Work Leadership from Employer to Supervisor? ............................................................................ 38 4.13. What Types of Costs are Included in Assistance Allowance and Direct Payment for Personal Assistance Services? ............................................................................................................... 39 4.14. Can Surplus Funds be Saved of Transferred? ........................................................................ 40 4.15. How is this Managed within Private Companies? .................................................................. 41 4.16. How is this Managed within Municipalities? ......................................................................... 43 4.17. Do Employers within the Sector of Personal Essistance Run any Legal and Economic Risks? .. 44 4.18. Are Assistance Providers Allowed to Make Profit? ................................................................ 47 4.19. What does the Duty of Confidentiality Mean? ...................................................................... 48 4.20. What Institutions are Responsible for Inspection of Assistance Providers? ......................... 49 4.21. What does Reporting under Lex Sarah Mean? ...................................................................... 50 4.22. What does Reporting According the Social Service Act for Protection of Children Mean? ...... ............................................................................................................................................... 51 5. Personal Assistants ............................................................................................................. 52 5.1. Who can Work as a Personal Assistant? ................................................................................ 52 5.2. Who Works as a Personal Assistant? How many Assistants are There? ............................... 52 5.3. Are Personal Assistants’ Interests Protected by Organizations or Union Agreements? ....... 53 5.4. Is Personal Assistant Viewed as a Profession? What is the Salary Level Compared to other Professions? ........................................................................................................................... 54 5.5. How Long do Employments Usually Last? Do Assistants Work Full-time? ............................ 54 5.6. What Qualification is Required to Work as Personal Assistant? ........................................... 55 5.7. Are there Conditions of Seniority for Personal Assistants? ................................................... 56 5.8. Is Personal Assistant a Profession with a Shortage of Skilled Workers? ............................... 56 5.9. What Status does the Profession of Personal Assistant Have? ............................................. 56 5.10. Why is a Job as Personal Assistant more Insecure than other Care Work? .......................... 57 5.11. What Tasks a Personal Assistant is Allowed to Do? ............................................................... 58 5.12. Is Self-care of Personal Health Care Maintenance Allowed? ................................................. 59 5.13. How do Assistance Providers Manage Self-care? .................................................................. 60 5.14. Does a Double-financed System Exist for Personal Assistance in Sweden? .......................... 61 3 5.15. Can a Personal Assistant be Self-employed? ......................................................................... 61 5.16. What is a Vice Supervisor/Service Guarantor? ...................................................................... 62 5.17. Can the System with a Vice Supervisor Lead to Conflicts and, if so, How are These Dealt with? .......................................................................................................................................... 63 6. Market Forces in the Care: Private (for Profit) Organizations ................................................ 64 6.1. How many Private (for Profit) Companies Exist? What Size are They, Where are They Located? Who Founded Them? Who Owns them? ............................................................... 64 6.2. Do Personal Assistance Users Choose Private Companies more Often Now than Ten Years Ago? ..........................................................................................................................................