French Disability Policy : Interrogations in relation to inequality

1. French Disability Policy : Interrogations in relation to inequality William Sherlaw Ecole Nationale de la Santé Publique wsherlaw@ensp.fr

2. « Handicap est culture » • Two stories – about cars… • Potential paradox of all policies that address inequalities or difference • A case study about car parking… • We are both products and producers of culture and also actors. • French « Compensation » culture as performed in the new French legislation.

3. -1- Representation of people with disabilities definition of disability -10- Citizenship Participation -2- Right to Compensation MDPH -9- Prevention Research & Access to Health Care -3- Non discrimination Law 11 Feb 2005 Loi pour l’égalité des droits et des chances, la participation et la citoyenneté des personnes handicapées -8- Accessibility (buildings & transport) -4- Allowances & Income of PWD -7- Schooling -5- Information Orientation Aids Funding -6- Professional Integration Obligation Of employment

4. La loi du 11 fév 2005 & its principles • la loi du 11 février 2005 pour l’égalité des droits et des chances, la participation et la citoyenneté des personnes handicapées. • Key ideas • Compensation • Accessibility • Participation • Non-discrimination • Citizenship

5. French Definition of Disability • « constutes a disability,…/… all limitation of activity or restriction of participation in life of society that a person may be subjected to in his or her environment for reason of a substantial durable or definitive alteration of one or more physical, sensorial, mental, cognitive or psychological functions, of multiple disabilities or invalidating health problem. » • Explicit reference to the WHO International Classification of Functioning, health and disability

6. The Disability Discrimination Act (DDA) defines a disabled person as someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities.

7. Compensation • What is involved • What is proposed under the new French law

8. Compensation • Compensation constitutes the response to disabilities • It is personalised • It is holistic takes into account medical,psycho-affective, social aspects… • It is evolutive (depends on changes in state of health or social circumstances of the person, • Above all it involves the participation of the person him or herself, his or her family or legal representative • It is based on the evaluation carried out by the multidisciplinary team and life project • Although compensation is an allowance it is above all a plan

9. Aims to permit people with disabilities to fully exercice their citizenship and their capacity of independent living. • preschool child care • , schooling, • education, • integration in the workplace, • adaptation of dwellings or the work place • the development and adaptation of service provision • Respite care • the development of self help groups or places in specialised centres • aids of all kinds to people with disabilities or institutions to enable life in the community or in specialised centres • Access to organisations dealing specifically with disability as well as guardianship procedures.

10. Some quotes from the law These different appropriate measures should take into account the necessary care and provision for people with disabilities who can not express their own wishes. • «The needs for compensation are drafted in a plan based on consideration of needs and the aspirations of the person with disabilities as expressed in his or her life project formulated by the person themselves or failing this by theirlegal representative when the expression of wishes is not possible. » • This compensation is made possible by the creation of a an allowance for compensation which aims to fund the necessary measures to facilitate the life of the person with disabilities in connection with his or her life project

11. The following needs of compensation may be funded: • Needs for human assistance equally concerning family carers • Needs for technical aids (protheses, wheel chairs etc) • Needs for adapting dwellings or vehicles • Specific and exceptional needs (linked to the acquisition or upkeep of products linked to the disability) • Needs for guide dogs or other animal aids • Needs for the presence of a outside help in order to accomplish essential daily living activities

12. A slice of culture… A first act in the process of assessment… Who is involved ? Who decides ? How do they decide ? What implicit model is being used ? What are the potential consequences ?

13. Certificat Médical Personne Adulte Handicapée Dear Colleague I would be most grateful if you would complete this medical certificate and return it to your patient sealed in order to maintain confidentiality and so he can enclose it with his application In order to permit the doctors of the pluridisciplinary team of the Maison Départementale des personnes handicapées (MDPH) to carry out a study of the dossier in the shortest time possible and to propose to the Commision for Rights and Autonomy of Disabled People (CDA) a fair decision please complete the different sections of this form enclosing complementary documentation if you judge this to be useful.

14. Dear Colleague… The members of of the pluridisciplinary team will use the disability scale in order to assess the impairments and incapacities of disabled people An impairment corresponds to a disorder of organs and functions An incapacity characterises the limitation of capacities for accomplishing elementary acts of daily living The social disadvantage which results characterises the limit or impossibility to accomplish a role considered as normal with regard to age, gender and sociocultural factors This scale fixes the different levels of incapacity, according to the degree of the impairment, this being guaged by the repercussions on functional capacities and on autonomy within daily life May I remind you that the multidisciplinary team of the MDPH, all the services and the members of the CDA are subject to the rules of medical confidentiality (art 378 Penal Code) The Physician of the multidisciplinary team of the MDPH will be happy to offer you any additional information on request.

15. « DESCRIPTION OF IMPAIRMENT» • Intellectual Deficiency and/or psychological or behavioural difficulties (Problems of memory, temporal-spatial orientation, mood, vigilance, emotional life and behaviour) • Impairments related to epilepsy (enclose last summary of EEG • Hearing Impairments • Language and speech impairments • Visual impairment • Cardiovascular and respiratory impairment • Impairments of digestive tract and function • Urinary function impairment • Metabolic and enzymatic impairment • Immune system & circulatory system impairment • Motor and locomotory impairment • Aesthetic impairments

16. Consequences of impairments Independence A: does the activity totally independently,routinely , correctly B: Does it partially, non routinely, not correctly C: Does not do it

17. AUTONOMY A, B or C

18. Some more double binds for families (and professionals) and people with disabilities • There is a natural tendency to want to highlight the positive aspects of your loved ones • However to maximise resources – it would seem necessary to highlight deficits rather than positive things • Compensation in theory could vary according to a) the socio-cultural & physical (disabling or enabling) environment • 2 people with the same impairment could get different allowances • 2 people with different life projects could get different allowances

19. Other possible perverse effects • People who are better or are assisted by advocates may achieve higher levels of compensation • The very people who need most compensation could lose out due to a) lack of project b) lack of advocacy • Due to long delay and backlog of dossiers there may be a tendency to be expeditive… • This runs counter to the spirit of the law which places great emphasis on involvement.

20. Thank you • 2 Written texts on cars… & discrimination