Report from the Commission to the Council, the European Parliament, the Economic and Social Committee and the Committee of the Regions on the evaluation of the third Community action programme to assist disabled people (Helios II) (1993-1996)
Date: 1998-01-20
Institutions: European Commission
Subjects: action programme, disabled person, exchange of information, project evaluation, social integration

.tStAlki 

COMMISSION OF THE EUROPEAN COMMUNITIES 

Brussels,  20.01.1998 
COM(1998)  15 final 

REPORT FROM THE COMMISSION 

TO THE COUNCIL, THE EUROPEAN PARLIAMENT, 
THE ECONOMIC AND SOCIAL COMMITTEE 
AND THE COMMITTEE OF THE REGIONS 

ON THE EVALUATION OF THE THIRD COMMUNITY ACTION 
PROGRAMME TO ASSIST DISABLED PEOPLE (HELIOS II) 

1993-1996 

Contents 

EXECUTIVE SUMMARY 

1. 

INTRODUCTION 

OVERVIEW OF THE HELIOS II PROGRAMME 

2.1 

Objectives 

2.2  Measures 

2.3 

Funding 

2.4  Management structure of the programme 

2.5 

Overview of the participants in the programme 

3. 

EVALUATION OFTHE PROGRAMME 

3.1.  HELIOS  II as a laboratory 

3.2 

Evaluation of the programme processes 

3.2.1 Participation of disabled people in HELIOS II 

3.2.2 Effectiveness  of the management  structures 

3.2.3 Structural  links between different  Community  initiatives 

1.3 

Evaluation of the impact of the programme 

3.3.1  Transferof  learning 

I-II 

1 

1 

1 

1 

2 

2 

3 

4 

4 

4 

5 

6 

6 

7 

7 

3.3.2 Contribution  to the development and support of nelworks 

9 

3.3.3 Contribution  to the development of synergies between  Community and 

national  policies 

4. 

LESSONS TO BE DRAWN 

4.1 

Added value 

4.2 

4.3 

Limitations of the programme 

Implications for future  action 

10 

12 

12 

13 

13 

U) 

4.3.1 Steps to promote a rights based approach in the field of disability 

14 

4.3.2 Steps to enhance the dialogue with Member States 

4.3.3 Steps to ensure the full representation of disabled people and 

organisations in mainstream actions 

14 

15 

4.3.4 Steps to ensure a real civil dialogue with Non-Governmental 

16 

Organisations 

5. 

THE WAY FORWARD 

16 

C(0 

1, 

INTRODL'CTION 

The Third Community Action Programme to assist disabled people, known as the "HELIOS II 
programme",  was  established  by  Council  Decision  93/136/EEC  of  25  February  19931.  It 
programme",  was  established  by  Council  Decision  9 
covered the period  1  January  1993 to 31 December 1996. 

Article  11(3) of  the  above-mentioned  Decision  establishes  that  the  Commission  must  submit, 
beibre  1  July  1997 a full  report  to the Luropean  Parliament, the Council  and  the Economic and 
Social Committee on the implementation and the results of HELIOS II. 

In accordance  with  Articie  11 (4) of the Decision  of 25 February  1993 and with  section  1.2  of 
thc Annex to the Decision, the report is essentially based on the outcome of an independent and 
objectivc evaluation of all the measures adopted under HELIOS II  . It seeks to give an overview 
of  the  flndings  of  the  independent  evaluation,  and  its  implications  for  future  actions  in  the 
field  of disability. 

2. 

OVERVIEW OF THE HELIOS II  PROGRAMME 

2.1 

Objectives 

The  HELIOS  II programme  was set up with the aim of promoting equal opportunities for and 
integration of disabled  people.  Underlying these aims are four key objectives: 

1.  to  develop  and  improve  exchange  and  information  activities  with  Member  States 

and non governmental  organisations; 

2.  to  promote  effective  approaches  and  measures  in  order  to  achieve  increascd 

effectiveness  and  better co-ordination of actions; 

3.  to  promote  the  development  of  a  policy  at  Community  lcvel  of  co-operation  with 
the  Member  States  and  the  organisations  and  associations  concerned  with 
integration,  based  on  the  best  innovative  and  effective  experience  and  practice  in 
Member States; 

4.  to  continue  co-operation  with  European  NGOs  and  NGOs  which  are  regarded  as 
representative  in the respective Member States, through national disability councils. 

2.2  Mcasures 

The main measures designed  to promote these objectives were as follows : 

OJ 1,56/30 of 9.3.93. 
l;or  this rcason, thc  cvaluation  was  entrusted  by  the Commission,  following  an  invitation  to tcnder, to the 
Tavistock  lnstitute  (United  Kingdom) in co-operation  with  three  other  research  institutes:  Nexus  (Ireland), 
liCWS (Netherlands)  and  Prisma (Greece). The report  is available  as a working document of the services of 
the Commission  (in  English only). 

1.  Activities relating to exchange and information  between the Member States  : consisting of 
conferences, seminars, exchange of information,  study visits and training courses organised 
in the  areas of functional  rehabilitation,  educational  integration,  economic  integration  and 
social integration  for people with disabilities. Participants in such activities were appointed 
by the Member States. 

2.  Collection,  exchange  and  dissemination  of  information  gathered  in  the  Member  States 
through  the  development  of  the  computerised  information  and  documentation  system 
HANDYNET 

3.  Co-operation  with NGOs through  the funding  of conference,  study  visits, training  courses 
and other  European-scale co-operative activities, the provision of information  for NGOs on 
actions  undertaken  at Community  level  and advice  from  the NGOs to the  Commission on 
specific  issues 

4.  Information  and  awareness-raising  aimed  at  public  opinion  through  the  award  o\' nnnunt 
prizes for model projects  in the various fields  relating  to integration  of disabled  people aiui 
through media activities 

2.3 

Funding 

The amount of funds  estimated to be necessary  for the implementation  of the programme was 
37  million  ECU.  The  budget  allocation  was 40.16  MECU  and  the  amount  effectively  spent 
was 39.74 MECU. 

The breakdown of funding  per year was as follows (in million ECU): 

Year 

1993 
1994 
1995 
1996 

Budget 

Execution 

5.60 
1O06 
1L81 
I 12.69 

"  5.40 

1O04 
1_L78 
I  12.52 

2.4  Management structure of the programme 

The  central  management  of  the  programmc  was  undertaken  by  the  Commission  with  the 
support  o(  an  external  technical  assistance  office  (the  HELIOS  Team  of  Lxperts)  and  a 
numbcr of consultative committees including: 

•  Advisory  Committec: made up of Member State government  represcntativcs; 

©  European  Disability  Forum:  made  up  o\" National  Disability  Counciis  and 

Luropean NGOs; 

•  Liaison  Group: made up of representatives  from  the other two committees,  set up 

to provide an interface between them. 

At  national  level,  the  consultative  mechanisms  of  the  programme  required  a  national  co-
ordinating  body  represented  on  the  advisory  committee,  and  a  national  disability  council 
represented  on  the  European  Disability  Forum.  The  national  co-ordinating  body  was 
responsible  for  the  selection  of  participants  for  Information  and  Exchange  activities,  and 
provision  of  support  for,  and  evaluation  of,  HELIOS  II  activities  at  national  and  local  level. 
An important part of this task was the organisation of national information  days, usually on an 
annual  basis.  The  variations  in co-ordinating  structures  from  country  to  country  meant  that 
these provided rather varied opportunities for co-ordination and information  exchange. 

At local level, information  and exchange activities were co-ordinated  by lead members among 
the  participants  themselves.  The  HELIOS  Team  of  Experts  had  a  major  role  in  providing 
support to the co-ordinators of activities at a local level. 

2.5 

Overview  of the participants in the programme 

The  activities  of  HELIOS  II  provided  opportunities  for  a  large  number  of  organisations 
involved in the field of disability at local, national and European levels, to become involved in 
discussions  and  exchange  with  similar  organisations  from  other  Member  States.  This 
included  around  1150  core  participants,  who  had  a  continuing  involvement  in  programme 
activities  throughout  the  three  years,  and  around  30,000  peripheral  participants  vvhose 
involvement was more limited. 

Corc 11EL10S II participants 

Members of Consultative 
Structures 

Number of 
Organisations 

Characteristics 

Advisory committee 
European Disability Forum 

Working groups 

Participants in local 
activities 
Participants in Information 
and  Exchange activities 

Participants  in I1ANDYNLT 
centres 

34 
17 
13 
2 
84 

832 

142 

National government  officials 
National  Disability  Councils 
European NGOs 
Social partners 
Government officials,  NGOs and 
professional  experts 

Mainly organisations  providing 
services to disabled people and 
education  institutes 
Lxperts and service providers, 

hese included  represenU'tives from  Norway and Iceland 

Peripheral participants included organisations and individuals involved  in the NGO  exchange 
activities  ,  the  members  of  the  NGOs  represented  on  the  consultative  committees  of  the 
programme  (856  National  and  European  NGOs)  and  applicants  in  the  annual  HELIOS  II 
competitions  (around  200  a year).  Beyond  this, there  were  also the  participants  in  National 
Information  Days  organised  by  individual  Member  States  (no  consistent  data  available  on 
numbers  involved),  other  members  of  the  organisations  that  participated  in  HELIOS  II 
activities, and the readers of its various outputs.  Potentially, the last of these included  a very 
broad  spectrum of disability  organisations  across Europe: the mailing  list  for  HELIOSCOPE 
and Flash was over 30,000. 

3. 

EVALUATION OF THE PROGRAMME 

The main findings of the external evaluation are developed below. 

3.1  HELIOS II as a laboratory 

HELIOS  II  incorporated  a  number  of  innovative  aspects  which  took  forward  Community 
approaches to disability policy in three important ways: 

1. 

2. 

Where  earlier  action  programmes tended  to emphasise  a  'welfare'  orientation 
towards  disability,  HELIOS  II  focused  more  on  issues  of  equal  opportunitics 
and integration. 

Rather  than  promoting  change  via  support  for  pilot  actions  or  demonstration 
projects, HELIOS II operated  within  a social  learning  model of change,  based 
on local exchange, combined with a more policy-led model of action, the latter 
being  pursued  through  the  dissemination  of  learning  derived  from  local 
exchanges  and  the  provision  of  a  structure  for  co-operation  between 
organisations at national and European levels. 

3. 

HELIOS  II  was  the  first  action  programme  in  which  a  formal  structure  was 
established for consultation with disabled people and their organisations. 

The  innovative  aspects  of  HELIOS  II  gave  a  strong  experimental  element  to  the  whole 
programme which, combined  with its emphasis on exchange  and  learning, suggested  that  the 
programme  could  be  seen  in  some  respects  as  a  'laboratory'  in  which  issues  related  to 
disability, equal opportunities and  integration  could  be examined, new understandings  forged. 
and new solutions tested before  being disseminated to a wider audience.  In this respect. it was 
important  for the evaluation to pay close attention not only to the outcomes of the programme, 
but also the processes by which these outcomes were achieved. 

3.2 

Evaluation  of the programme  processes 

Three  processes  are  examined  undcr  this  heading:  the  involvemenl  in  the  programme  of 
disabled  peopie, the  management  of the programme, and the  synergy  of the  programme  with 
other actions taking place in the field of disability. 

Extrapolating from  a sample of annual sector reports estimated at around 24.000 a year. 

3,2,1  Participation of disabled  people ia HELIOS II  5 

Although  major  steps  were  taken  to  encourage  a  high  level  of  representation  of  disabled 
people and  their organisations  in some of  the consultative structures  of the programme, there 
ware areas of the programme in which disabled people remained  underrepresented. 

This  was  particularly  true  of  activities  in  the  information  and  exchange  programme.  The 
choice of participants in these activities was mainly the result of Member States'  strategies  for 
nominating  participants  and  their  strategy  for  disseminating information  about the  upcoming 
programme.  However,  a  number  of  structural  problems  remained  which  also  inhibited  the 
ability  of  disabled  people,  and  disability  organisations,  from  participating  in the  programme 
on an equal basis to professionals  and professional service organisations. These included: 

•  Availability  of  resources  and  suitable  facilities:  organisers  of  exchange  activities 
ofteh  failed  to  take  into  account  the  need  for  fully  accessible  facilities,  and 
timetables  appropriate  to  the  needs  of  disabled  participants.  Part-funding  of 
activities and the late reimbursement of expenditure presented financial  difficulties. 

•  Accessibility  of  information:  too  much  information  and  the  late  arrival  of 
information  prior  to  meetings  presented  problems,  particularly  for  participants  in 
the consultative structures who needed to consult with their members. 

•  The  level  of involvement  was a particular  problem  with  information  and  exchange 
activities, where  local organisations  were  invited  to encourage  a higher  proportion 
of disabled participants, but made it difficult  to maintain continuity of involvement. 

•  The  quality  of  the  discussion  that  took  place:  a  tendency  remained,  in  some 
activities, for  some professionals  to regard disabled people as lacking the necessary 
expertise  to  take  part  in  discussions  on  an  equal  basis,  and  disabled  participants 
sometimes  feit  that  professionals  and  service  providers  vvere  more  interested  in 
maintaining the status quo than in change. 

!n resionse  io widespread concern, expressed at the under representalion of disabled  peoplc in 
pro^rdmnw  activities  in  the  early  stages  of  the  programmc,  efforts  wcre  made  by  the 
Commission to increase their involvement.  These efforts  had a positive impact, particularly  in 
1'VJSJ  secinrs  where  involvemen!  of  disabled  people  is  not  part  of  thc  traditional  approach. 
Purticipution  in  the  sector  on  social  integration  was  from  the  start  reasonably  high  (around 
50%);  in  ihe  sectors  of  functional  rehabilitation  and  education  the  proportion  of  disabled 
participants  moved  up  to  20%;  and  in  economic  integration  the  proportion  doubled  from 
appraximately 20% to 40% by the end of the programme. 

Although  a  primary  focus  of  the  evaluation  activities  was  on  the  participation  of  disabled  people  in 
programme activities,  it should  be  noteci  that  concern  was  also  expressed  at the  under-representation  of 
other groups.  For example,  in activities  v/ithin  the  economic  integration  sector,  the  lack of  involvement 
of  employers  was  noticeable  and  in  some  NGO  exchange  activities,  there  were  very  few  national  and 
Europsan reprssentatives with  a policy  remit. 

Partly  as  a result  of these  efforts,  many  of the  exchange  activities  did  represent  a major  step 
forward  in  encouraging  a  dialogue  between  service  providers  and  disabled  people.  This 
appears  to  be  having  repercussions  in  terms  of  changing  attitudes  in  the  organisations  to 
which participants returned and wider national policies. 

3.2.2  Effectiveness of the rjianagement structures 

Concerns  were  raised  at the  start  of  HELIOS  II  regarding  the  complexity  of  the  programme 
structures,  which  led  to  the  tbcusing  of  evaluation  activities  on  this  element  of  the 
programme. 

Overall,  there  was  broad  agreement  that  the  support  provided  by  the  Commission  and  the 
HELIOS  Team  of  Experts  was  effective,  and  welcomed,  particularly  by  the  participants  in 
programme  activities  at  a  local  level.  However,  the  evaluation  highlights  that  considerable 
resources  are  required,  particularly  m  encouraging  a  high  level  of  partieipation  of  disabled 
people  in  the  programme.  The  resources  requirement  needed  to  take  inlo  accouni  both  the 
overall  manpower  requirements  and  the  kind  of  expertise  required,  which  included  gcncral 
experience of the disabiiity  fîeld  and  issues  reiated  to effective  integration  and  partieipation 
by disabled people. 

Other  areas  of  difficulty  that  were  identified  reiated  to  the  consultative  structures  of  the 
programme,  and  the  level  of  communication  that  took  place  between  the  Commission  and 
national  govemment  departments,  and  in  some  cases,  between  different  ministries  at  a 
national  level.  One  of  the  central  diffîculties  in  the  consultative  structures  was  the  different 
lines  of  development  which  took  place  between  the  two  main  consultative  bodies  (the 
Advisory  Committee  and the  European  Disabiiity  Forum) and the fact  that  the  Liaison  group 
was insufficient.lv  robust to deai with the differences  between the two committees. 

3.2.3  Struetural  links  between different  Co-mmunity initiatives 

The struetural  links between  HELIOS  II and  other programmes  and  initiatives  at  Community 
level  were  maintained  by  the  Commission  via  an  mterserviec  group.  and  through  the 
oonsultative  structures  of the  programme.  ïmportant  changes  took  place  tn some  of the other 
programmes  and  initiatives  rclating  to  disabiiity,  which  can  be seen  to  be direclly  reiated  to 
the links estahlidied by the Commission at this level (see section  3.3.3.) 

At  national  level,  struetural  links  between  different  Community  programmes  and  initiatives 
reiated  to disabiiity  were estahlished  in  around  half the Member  States. However,  it  must  be 
noied  that  in  larger  Member  States, responsibility  fcr  different  Community  programmes  and 
initiatives  often  falls  within  difTerent  ministries,  which  Iimits  the extent  of  co-operation  and 
co-ordination  between  officials  at  this  level.  A fevv  countrîes  adopted  a consciou-s  poliey  of 
encouraging  participants  in HELIOS II to apply  for cther programmes or initiatives, and some 
favoured  participants  in  other  Community  activities  in  thcir  selection  of  HHLIOS  !i 
purticipunts.  This  led  to  considerable  overlap  at  a  local  level  between  programme 
participants,  with  around  60%  the  local  participants  în  the  HELIOS  11 programme  cithcr 

involved in, or having applied for funding  under, other Community programmes or initiatives. 
HORIZON  was  the  most  frequently  mentioned  initiative.  Many  participants  indicated  that 
taking part in HELIOS II had made a significant  contribution to their ability to gain access to 
other  Community  activities  through  provision  of  information,  opportunities  to find partners. 
and through gaining experience of working at European level. 
This  highlights  the  distinctive  nature  of  the  HELIOS  II  programme,  which  did  not  in  itself 
provide  resources  for  demonstration  or practical projects.  However,  the  function  it  provided 
was  very  complementary  to  those  that  did,  through  providing  opportunities  to  exchange 
information,  develop ideas for new activities, and to gain experience. 

3.3 

EVALUATION OF THE IMPACT OF THE PROGRAMME 

The impact of HELIOS II has been examined in relation to three elements: 

• 

the  extent  to  which  it  promoted  the  transfer  of  learning  related  to  'effective 
approaches and measures' between participants at a local level; 

• 

its contribution to networking and co-operation between disability organisations; 

•  and  its  contribution  to  synergy  and  policy  development  at  national  and  European 

levels. 

3.3.1  Transfer of learning 

The transfcr of lcarning within a programme such as HELIOS II can take placc at a numbcr of 
to  distinguish  between  transfer  as  process  (i.c.  the  exchange  of 
lcvels.  It  is  helpful 
information)  versus  transfer  as  outcome:  (i.e.  the  adoption  of  new  practicc)  and  inlernul 
transfer  (between  member  of  the  programme)  versus  external  transfer  (dissemination  of 
lcarning to a wider audience). 

A. 

Exchange between participants within the programme 

The  level  of exchange  that took  place between participants  within  the  programme  itself  was 
widely  reported  as  one  of  the  most  effective  elements  of  the  programme.  Almost 
overwhelmingly,  participants  reported  that  they  had  derived  value  from  their  exchange 
cxpcricnces. For three quarters of respondents in the survey, this had  led to a better conccpt of 
good  practice,  and  ideas  on  how  they  could  improve  their  services.  The  enhaneed  sense  of 
solidarity (90%) and support they received from  other participants (75%) were also valued. 

Learning  was  more  often  conceived  of  in  terms  of  cultural  shift,  rathcr  than  speeilie 
information:  a  new  orientation  towards  disability  issues  or  an  increased  openness  to  new 
ideas.  Experience  at  this  level  highlighted  some  conditions  which  best  promoted  effeclive 
cross cultural, cross disability, and cross professional  exchange. 

B. 

Dissemination of learning to others, outside the programme 

Information  and  learning  derived  firom  programme  activities  were  shared  with  a  wider 
audience either: 
• 

through the efforts  of the participants themselves, when they returned  to their own 
location (horizontal transfer) or 
through the written reports and publications of the programme (vertical  transfer) 

• 

Horizontal  Transfer 

Most  programme  participants  appear  to  have  made  considerable  efforts  to  share  the 
knowledge that they had derived from the programme with others.  Typically, this took  place 
through  discussions  with  colleagues  (97%),  reports  sent  to  members  of  their  organisations 
(73%),  or  through  articles  sent  to  newsletters  (57%),  or  disability  journals  (39%).  Many 
organisations  (75%)  were  also  successful  in  obtaining  some  kind  of  mcdia  covcragc, 
although  they  were  usually  morc successful  at  local  ncwspaper or  radio  coveragc  than  either 
national, or lelevision  covcrage and  morc successful  with  the spccialisl disability.  ralher than 
public, media. 

The  lack  of  resources  was  the  main  obstacle  to  sharing  their  experience  with  a  wider 
population.  HELIOS  II  did  not  fimd  wider  dissemination  activities  (apart  from  national 
information  days) and for  organisations where staffing  and resources were limited, this could 
present problems. 

The  role of  national  co-ordinating  bodies  was particularly  important  in ensuring  the  wider 
dissemination  of  the  learning  that  arose  from  programme  activities.  80% of  participants  in 
information  and  exchange  activities  reported  having  shared  their  experience  of  exchange 
activities with others at HELIOS II conferences and national information days. 

Vertical  Dissemination 

In  addition  to  the  dissemination  of  information  via  this  horizonlal  exchange,  a  substantial 
number of information  documents has been prepared to support the programme objectives.. 

Dissemination  of  materials  was  mostly  through  mailing  to  programme  participants,  or 
distribution  by participants  themselves. National  representatives  varied  in their  plans for  any 
further  dissemination;  a  few  planned  to  send  copies  of  materials  to  all  local  and  regional 
authorities, while others had no clear plans for dissemination at all.  This does raise the wider 
issue of the nced  for a clear dissemination  strategy for materials generated  by a programme o\' 
this  kind.  Wide  dissemination  of  the  learning  derived  from  programme  activities  is  an 
important  prerequisite for the wide-scalc debate of the issues. 

I1ANDYNET  was  also  criticiscd  because  it  was  more  aligned  to  the  needs  of  profcssionals 
than  to the  needs of disabled  pcople themselves, although  steps were  taken  part  way  through 
the  programme,  in  response  to  the  interim  evaluation  report,  to  involve  disabled  pcople  and 
their organisations morc actively  in the development of the database. 

C. 

Application of learning by participants in the programme 

Although  many  participants  (53%  information  and  exchange  and  56%  NGO  survey 
respondents)  indicated  that  they  had  been  able  to  adopt  innovative  practices  in  their 
organisations  as a result of the programme activities, at or above their expectations, for  many 
participants,  translating  ideas  into  practice  was  a  long-term  project.  Some  indicated  that  a 
process of change had begun, and attitudes within the organisations in which they worked had 
ehanged - an essential  prelude to change. However, translating ideas into action often  rcquired 
resources.  In this respect, they indicated that the programme had supported them in two ways: 

• 

it  reinforced  the  convictions  that  participants  already  had  about  new  approaches, 
sometimes  providing  additional  material  with  which  to  convince  colleagues  and 
obtain local  funding; 

• 

the  programme  had  also  helped  many  to  gain  access  to  another  Community 
programme which did provide the resources for new projects. 

D. 

Contribution of the programme to wider developments in policy and practice 

Survcys of programme  participants indicated that nearly  half believed  that they  had  had some 
inlluence  on  policy  development  at  local  (48%)  or  national  (43%)  level,  although  this  was 
rarely  as much as they  would  have liked to have achieved.  However,  many  organisations  felt 
that  their  pubiic  profile  had  been  enhanced  by  the  programme,  which  it  was  hoped  would 
contribute  to  their  ability  to  influence  policy  in  the  future.  This  element  was  also  closcly 
linked  to  the  contribution  that  the  programme  had  made towards  networking  and  enhancing 
the lobbying capacity of disability organisations, which is discussed in the next section 

3.3.2  Contribution to the development and support of networks 

Disability  networks had an important role to play in the achievement  of the main  programme 
objectives.  The  extent,  for  example,  to  which  HELIOS  II  was  able  to  contribute  to  the 
transfer  of  learning  across  Europe  was  largely  dependent  on  the  capacities  of  organisations 
involved  in exchange activities to disseminate  information  to a wider audience, which  in turn 
was  dependent  on  their  networking  capacities.  Therc  was  also  a  view  held  by  some 
participants  that  the  most  effective  long-term  contribution  that  the  programme  could  makc, 
towards  promoting  of  equal  opportunities  and  integration  for  disabled  pcoplc,  was  through 
providing  opportunities  for  disability  organisations  to  build  an  effective  platform,  or  lobby, 
irom which to press for change at national and European levels. 

There  was  considcrablc  cvidcnce  to  suggest  the  consultative  structures  of  the  HELIOS 11 
progrumme,  together  with  its  funded  activities,  have  made  an  important  contribution  to  the 
lcvel  of  networking  taking place between  organisations  involved  in disability  issues, through 
fostering  new networks, strengthening  existing  networks or encouraging  networking  between 
new groups of participants. 

At  European  level,  HELIOS  II  has  greatly  strengthened  and  enhanced  the  level  of  co-
opsration  between  European  NGOs  and  between  these  and  national  NGOs,  sometimes 
increasing  the contact  and  level  of consultation  between  these  and  national  governments  and 
local  organisations.  There  appears  to  be  a  higher  level  of  co-operation  now  around  broad 
issues  (sueh  as  promoting  equal  opportunities  policies),  ralher  than  around  individual 

disability,  or  sector-specific  issues.  This  in  turn  enables  cross-disability  /  cross-sectoral 
dialogue to take place. 

There  is  some  evidence  that  co-operation  between  professional  agencies  and  organisations 
representing  disabled  people  have also  been  enhanced,  and  that  participative  structures  have 
been  aiso  been  strengthened,  both  within  individual  organisations  and  at  national  and 
Luropean levels. 

3.3.3  Contribution  to the development of synergies between Community  and national 

policies 

There does appear to have been a considerable  shift  towards increased  synergy  in the last  few 
years,  both  between  different  Community  programmes  operating  in  the  field  of  disability,  in 
particular  the  Structural  Funds, and between  disability  policies  at a national  level.  The exact 
contribution  of  HELIOS  II  itself to this  change  is not  easy  to  estimate  at  a time when  many 
different  forces  are operating  to shape social policies  at all  levels.  However. it was  apparent 
that  the  programme  has  provided  important  opportunities  for  dialogue  between  different 
parties,  and  the  activities  and  structures  of  the  programme  have  underlined  and  supported 
In  this  respect,  it  has  provided  an  important 
developments  taking  place  elsewhere. 
complementary  function  to  Community  action  programmes  and  initiatives  operating  in  the 
field  of disability. 

A. 

Contribution to policy development at Community  levei 

The Communication  of 30 July  1996 on Equality  of Opportunity  for  People vvilh Disabilitics -
A New Community  Disability  Strategy  \the  Resolution of 20 Deeember  1996 of the Councii 
and  Government  representatives  meeting  within  the  Councii  on  Equality  of  Opportunity  of 

n 

People  with  Disabilities  as  well  as  the  Resoiution  of  the  European  Parliament  of  13 
December  1996  on  the  Rights  of  Disabled  peopie  represent  important  steps  forward  in  the 
dcveloprnent of equality of opportunity of people with disabilities at EU Ievei.  Debates taking 
place within the context of HELIOS II have provided an important  input  into the deveiopment 
of this policy. 

One  important  source of influence  has been the European  Disability  Forum, which  as part  of 
the  consultative  structure  of  the  HELIOS  II  programme,  has  piayed  an  important  role  in 
raising  awareness  of issues  which  lie within  the competencc of the  Union, and  which  have a 
direct bcaring on the quality of life of disabled  people.  This has eneouraged greater diaiogue, 
holh  between  different  parts of the Commission,  and  betwcen  the Conimission  and  disability 
organisations, on thcsc issucs. 

Effeclive  intcrventions  and  visible  steps  to  consider  thc  needs  of  disabled  people  in  othcr 
Europeun  programmes  have  been  taken  during  the  last  two  years,  when  thc  "sccond 
generalion" of Commimity  Initiatives was  introduccd.  This  may  bc taken  as an  indication  of 
the  contribution  of  HELIOS  II  towards  thc  achievemcnt  of  synergy  regarding  disability-
related  policics  at  European  level.  Changes  in  the  Community  Initiatives  and  in  EU 

COM (406)  final. 
OJ noC  12 of  13.01.97. 
OJ no C 20 of 20.01.97. 

10 

programmes  to  cater  for  the  needs  of  persons  with  disability  were  identified  for  examplc  in 
SOCRATES,  YOUTH  FOR  EUROPE,  LEONARDO  and  TIDE.  Strong  links  have  been 
established  with  HORIZON  at  national  level,  with  considerable  overlap  between  participants 
in  the  two  programmes.  A  number  of  new  actions  have  also  been  initiated  after  the  end  of 
HELIOS  II,  by  other  Commission  Directorates-General,  which  represent  an  important  step 
toward  the  mainstreaming  of  disability  issues;  such  as  the  working  groups  sport  and  lourism, 
the  setting-up  by  the  Danish  Government  of an  European  Agency  for  Development  in  Special 
Education  and  the  distribution  of  material  generated  by  the  cxehange  aetivities  within  the 
cducation  sector. 

B. 

Infiuence  on policy  development  at national  and  local  level 

During  the  course  of  the  HELIOS  II  programme,  many  Member  States  were  involved  in  a 
process  of  implementing,  or  considering,  major  policy  changes  which  would  have  an  impact 
on  the  quality  of  life  of  disabled  people.  How  far  the  HELIOS  II  programme  had  any 
infiuence  on  this  was  hard  to  assess.  Changes  in  socio-economic  conditions  and  in  welfare 
systems  were  often  more  decisive;  for  example,  in  issues  related  to  finaneial  provisions  and 
services  for  disabled  people. 

However,  national  representatives  in  a  number  of  Member  States  indieated  that  HELIOS  II 
had  an  infiuence  on thc development  of national  policy  in the  following  ways: 

•  Providing  background  information  and  modcls of  practicc; 

• 

Indicating  areas  in  which  national  policy  ncedcd  to bc dcvclopcd; 

•  Providing  a forum  in which different  parties came together  to discuss  policy; 

•  Creating  the  necessary  conditions  for  a  change  in  policy  (clear  policies  at  a 

European  level  was  indicated  as relevant  here); 

•  Reinforcing  policy  directions  which  were already  under  discussion; 

•  Enhancing 

and 
strengthening  their  capacity  to lobby  for  change. 

support 

solidarity  between  disability  organisations. 

and 

Areas  of  policy  infiuence  includcd  policies  on  anti-discriminalion,  equal  opportunities,  new 
technologics,  training,  pathways  cotmselling  and  job  coaching  and  thc  setting  up  of  nevv 
inlcideparlmcnlal  commitlecs  and  commissions.  Thc  prioritics  for  change  varied  in  each 
coimtry;  in  many  countries  legislative  changes  are  cither  in  hantl,  or  being  considcicd  in 
nceordance  with  the  philosophy  of  cqual  opportunilies,  but  employment  policies  were  also  a 
high  priority  in  a  inimbcr  of  Member  States,  particnlarly  linding  the  righl  balance  between 
issues 
sheltered  workshops,  proleeted  and  supported  employment 
considered  were  accessibility  (transport,  buildings),  education  and  training,  support  for 
parents and  families,  and  care  facilities  for  the most  severely  disabled  peoplc. 

initiatives. 

Other 

11 

4. 

LESSONS TO BE DRAWN 

HELIOS  II  represented  an  innovative  approach  to  Community  intervention  in  an  important 
field  of  social  policy.  The  evaluation  indicates  that  in  spite  of  its  limitations,  the  programme 
has  made  an  important  contribution  to  certain  developments  in  the  disability  field,  although 
many  of  these  developments  may  take  some time  to  come  to  fruition.  The  main  lessons  to  be 
drawn  from  the evaluation  of the programme  are drawn  under three broad  headings: 

• 
• 
• 

the addedvalueof  HELIOS  II 
the weaknesses  of the  programme 
the  implications  for  future  action 

4.1 

Added  value 

At  European  level, the programme  provided  added  value  through 

• 

• 

the  establishment  of  a  common  pool  of  knowledge  concerning  policy  contexts  and 
innovative  practices; 

increased  communication,  mainly  between  professionals  from  different  counlries, 
which  enabled  them  to  assess  their  performance,  promote  self-evaluation  and  put 
their practices  into  context; 

•  building  support  and  solidarity  between  disability  organisations,  and  enabling  many 
of  these  to  acquire  experience  which  has  enabled  them  to  participate  more 
effectively  in structures  and programmes  at European  level; 

At  national  level, the main  added  value of the programme  has been  the: 

•  stimulation  of  interest  and  creativity  in  the  disability  field,  through  participants 
familiar 

being  confronted  with  alternative  solutions  and  new  approaches  to 
problems; 

•  strengthening  of  solidarity,  support  and  communication  between  participants 
themselves, both within and  between  different  Member  States.  This has  contributcd 
to  the  breaking  down  of  isolation  of  disabled  persons,  informal  carers  and 
professionals  in the  field; 

• 

• 

• 

the  promotion  of  solidarity  in  more  or  less  politicised  forms  of  action.  This  has 
givcn  a  feeling  of cmpowerment  to and  assisted  organisations  of disabled  people,  to 
lobby  by  providing  argumentation,  incrcasing  pcrsuasiveness  and  upgrading  the 
prolilc oflobbying  associations; 

the  knowledge  and  self-awareness  of  both  users  and  professionals  vvere  enhanecd 
since  in several  cases,  they  were  brought  together  for  the  lirst  time; 

the  dcvelopmcnt  oi^  a  better  concept  of  good  practicc,  particuiarly  related  to  the 
activc  partieipation  of disabled  people  in scrvicc provision  and  policy  developnient. 

12 

The  actual  implementation  of  these  processes,  however,  must  be  seen  in  a  long-term 
perspective. 

4.2 

Limitations of the programme 

The most obvious  limitations of HELIOS II lie within the conccplion of the programme itsclf: 
focused  primarily  on  exchangc,  with  limiled  resourccs,  it  remained  vcry  dcpendent  on 
participants  at  a  national  and  local  level  for  its  capacity  to  bring  about  lreaF  changc  (in 
services and policy  for disabled  people), rather than merely stimulating  debate and enhancing 
awareness of issues. 

It  also  remained  very  dependent  on  local  and  national  participants  for  its  capacity  to  bring 
about real participation  and consultation for disabled people. One consequence of this was 
that the programme tended to replicate within  itself difficulties  directly  involving  of disabled 
people  which  are encountered  throughout  the field of disability  policy  and  practice.  Despite 
its  best  efforts,  these  limitations  were  never  fully  overcome.  This  refiects  the  uneven 
acccptance of a philosophy of action which sees disabled people themselves as essential actors 
in  the  proccss of changc  and  development,  and  an  underestimation  of the  level  of  additional 
resources requircd to support the direct involvement of disabled people. 

More  might  also  havc  bccn  made  of  thc  opportunities  provided  by  the  programme  to 
disscminatc  its  lcarning  to  a  wider  audiencc  through  a  elearer  disscniination  strategy. 
particularly  for thc matcrials devcloped towards the end of thc programme. 

A more  strategic  approach  might  have  been  taken,  and  more  resources  put  into.  the  lield  of 
public  awareness.  Media  involvement  in  activities  related  to  disability  is  hard  to  achieve, 
and  in  spite  of  some  successes  in this  area,  the  programme  mainly  addressed  itself  to  those 
already involved in the disability  field. 

The  development  of  solidarity  and  co-operation  at  European  level  related  to  issues  of 
disability  appears  to  have  been  less  effective  at  the  level  of  national  govemments,  in  part 
because  the  consultation  processes  of  the  programme  encouraged  bilateral  communication 
with the Commission, rather than effective  collaboration between national reprcsentativcs. 

4.3 

Implientions for f'uturc action 

These  implications  should  be seen  in  the contexl  of  the  new  Comnumity  Disability  Slmtcgy 
presentcd  in the Commission  Communication  of 30 July  1996, the Council  Rcsolution  of 20 
Deccmbcr  1996 and the Resolulion of the European  Parliament of  11 April  1997. 

The evaluation of  HELIOS  II provides some useful  information  with regard to the steps to be 
taken for the implementation of the new strategy. 

13 

4.3.1  Steps to promote a rights based approach in the field of disability 

The new disability  policy  framework  based on the principles of citizenship and equality  calls 
for further  research  and  analysis of the structural  nature of disadvantage  and  discrimination 
experieneed  by disabled  people. This need is highlighted  by the evaluation. Strategics are also 
needed to ensure that information  collected centrally is widely disserninated. 

Furthermore, the activc co-operation of Member  States will  be requircd  for  such  strategics to 
be effectivcly  implemented.  This  is the reason  why, within  the  framework  of the  lligh  Level 
Group  on  Disability,  the Commission  has  initiated  a debatc on  the  appropriate  ways  to pool 
research findings and expcrience in the field of disability. 

It is also clear that support  for and dissemination  of innovative practice could also play a role 
in  the  development  of  the  new  approach.  The  evaluation  suggests  that  targeted  and 
experimental  actions  towards  equal  rights,  consumer-driven,  support-oriented  and  personal 
planning  approach.  These  actions  would  not  overlap  with  any  other  existing  Community 
programme  or  initiatives  and  couid  constitute  appropriate  tools  to  achieve  the  goais  of  the 
Union.  Building  on the  knowledge  derived  from  HELIOS  II, on the exchanges as well  as on 
the  principles  set  out  in  the  New Community  Disability  Strategy,  the  Commission  launehed 
on  8 April  1997 a call  for  proposals  for  pilot  projects  of non  govcrnmcntal  organisations and 
associations formed by people with disabilities . 

l'ollowing  this  call,  more  than  100  pilot  projects  and  exchangc  activities  represenlinj. 
t* 
innovative  ways  of  cmpowering  people  with  disabilities  have  been  sclectcd  by  the 
Commission  and are currently being implemented across the European Union. 

4.3.2  Steps to enhance the dialogue with Member States 

The  primary  aim  of  the  Commission  is  to  pursue  an  integrated  and  coherent  approach  to 
disability,  as expressed  in the Council  Resolution  on Equality  of Opportunity  of People  with 
Disabilities. Such an approach also requires integrated structures. 

The evaluation  underlines that structures established  in the framework  of the follow-up to the 
Communication  of  30  July  1996  and  of  the  Resolution  of  20  December  1996,  such  as  the 
lligh-level  Group and the European  Disability  Forum represcnl signilicanl cfforts  towards the 
formalisalion  of  communication  channels. 
llowevcr,  it  cmphasiscd  that  these  structures 
should  become  truly  participative  in  order  to  avoid  distancing  themselves  from  uscrs  or 
becoming  a 'closed'  policy-making network  at Community  level, whieh  has  low visibility  to 
disabled  people,  professionals  and  administrators  at  local  level. 
It  is  also  important  that 
similarly  participative  structures  are  established  at  Member  State  level,  to  operatc  as 
"antennas" of the Community structures. 

OJNoC  109/18 of 8.4.97. 

14 

Co-ordination  also  implies  the  establishment  of  effective  communication  channels  between 
the public authorities  (European,  national) and the other interest groups and the promotion  of 
synergies among Community programmes and initiatives. 

The  further  development of strategic and executive capacities within the Commission is also a 
prerequisite  to promote  strategic  planning and cross-departmental  co-ordination  at policy and 
executive  levels.  The  evaluation  highlights  the  need  for  a  structure  which  could  advance 
thinking on  issues that pertain  to disability, propose strategic directions to the Commission  to 
accommodate  these  issues  and  liaise  actively  with various  Directorates  to promote  disability 
policies, and ensure synergy between sectoral programmes that include provisions for disabled 
people. 

The  new  High  Level  Group  and  European  Disability  Forum  all  represent  important 
developments  in  terms  of ensuring  that  debate  and  discussion  continucs at  Community  level 
but  which  require  considerable  efforts  of  the  Commission  itself  to  respond  to  initiatives 
arising  from  these,  to  develop  effective  links  between  the  many  areas  of  work  which  relate 
directly to the interests of disabled people, and co-ordinate policy. 
A section has been deleted here. 

4.3.3  Steps  to  ensurc  thc  full  representation  of  disablcd  pcople  and  organisations  in 

mainstrcam actions 

An  important  basic  issue  developed  in  the  framework  of  the  new  disability  strategy  is  thc 
principle  of  mainstreaming  which  entails  the  formulation  of  the  overall  Communily  policy, 
taking  into  account  the  needs,  the  interest  and  the  participation  of  disabled  people.  The 
importance  of  this  principle  has  been  reinforced  by  the  results  of  the  Intergovernmental 
Conference.  Article  6a  of  the  Treaty  of  Amsterdam  provides  that  kthe  Council  acting 
unanimously  on  a  proposal  from  the  Commission  and  after  consulting  the  European 
Parliament,  may  take  appropriate  action  to  combat  discrimination  based  on  sex,  racial  or  or 
ethnic origin, religion or belief, disability, age or sexual orientation'. The declaration  linked to 
Article  100a  provides  that  'in  drawing  measures  under  Article  100a,  the  institutions  o(  the 
Community  shall  take account  of the needs of people  with  a disability*. Lessons dravvn  from 
HELIOS  II  indicate  also  that  the  interests  of  disabled  people  cannot  be  ensured  within 
mainstream  activities  without  the  existence  of  suitable  measures  to  promote  their  full 
participation. These include: 

•  appropriate  resources:  which  are  particularly  needed  becausc  the  organisations 
that  represent  disabled  people  often  operate  on  very  limited  budgets,  and  rely 
heavily on voluntary  input; 

•  enhanced  accessibility:  the  experience  of  HELIOS  II  suggests  that  there  is  still 
widespread  lack  of  understanding  of  the  access  requirements  of  people  with 
physical, sensory  and mental disabilities. Access issues include the availability  and 
presentation  of  information  about  activities,  accessibilily  of  buildings,  transport, 
and the  timing and  limc-tabling of activities. It also extends to the attitude of other 
participants in activities; 

15 

•  monitoring:  the  accessibility  of  mainstream  actions  can  only  be  assessed  if  the 
participation  of  disabled  people 
includes 
consideration  of  the  extent  to  which  disabled  people  are  active  participants  in  the 
organisations  funded  under  Community  initiatives  and  programmes; 

is  adequately  monitored.  This 

*  availability  of  expertise  and  training:  the  role  of  expert  advice  in  strengthening 
the  capacities  and  enhancing  the  potential  of  disabled  people  to  intervene  and 
influence  changes  in  policies  that  affect  them,  has  been  shown  to  be  crucial. 
Suitable training  should  be considered  for  those  unfamiliar  with  the disability  field 
to  make  them  aware  of  the  implications  for  disabled  people  of  the  activities  fcr 
which they  are  responsible. 

4.3.4  Steps to ensure  a real civil dialogue with Non-Governmental  Organisations 

Ensuring  adequate  representation  of  disability  issues  in  all  mainstream  activities  also  requires 
to  advocate  for  appropriate  actions. 
suitable  mechanisms  for  disability  organisations 
I1ELIOS  II  has  contributed  substantially  to  this  end  by  establishing  dircct  eommunication 
channcls  bctween  the  Commission  and  NGOs,  and  among  NGOs,  by  providing  information 
Ilowcver,  many  of  the  relevant  organisations  remain 
and  technieal  support  and  rcsources. 
very  dependcnt  on  Community  funding  to  maintain  this  level  of  activity,  and  their  eapacily  to 
continue  to  operatc  depcnds  largely  on  further  action  in  this  area.  For  this  reason,  in 
accordance  with  the  budgetary  provisions  laid  down  in  1997,  the  Commission  has  already 
taken  the  necessary  steps  in  order  to  give  an  adequate  financial  support  to  the  work 
programme  of the European  Disability  Forum and of the European  NGOs  of co-ordination. 

5. 

The way  forward 

HELIOS  II  has  opened  many  doors,  identified  many  options,  and  begun  important  processes 
of promoting  a European  dialogue  on disability.  As the conclusions  of the evaluation  indicate, 
the  need  now  is  to  continue  the  process  of  dialogue,  formalise  what  has  been  achieved,  and 
carry  forward  the more promising  directions  identified  within the  programme. 

The  main  steps  to  carry  this  policy  forward  have  already  been  identified  by  the  Commission 
and  also  incorporated  in  its  New  Disability  Strategy.  Howcvcr,  the  linal  evaluation  also 
provides  invaluable  information  on  some  prerequisites  for  succcss  of  the  strategy,  the  way  to 
furlher  implemenl  it as  well  MS some  warnings  on  its possiblc  limitalions or  shortfalls. 

The  Commission  will  build  on  the  expericncc  gained  from  MELIOS  II  by  focusing  on  the 
following: 

a)  ensuring  thc  full  implementation  of  the  new  disability  strategy  as  outlined  in  the 
Communication  of  30  July  1996  on  Equality  of  Opportunity  for  People  with 
Disabilities  and  the Council  Resolution  of 20 December  1996, in particular  as far  as 
the  principle  of  mainstreaming  disability  issues  in  all  relevant  Community  actions 

and  programmes  and  the  co-operation  with  the  Member  States  and  NGOs  are 
concerned; 

b)  incorporating  in the  new  European  Community  Disability  Strategy  some  elements 
which  were  not  identified  prcviously,  in  particular  with  regard  to  the  necd  to 
conduct structural research on exclusion experienced by people with disabilities; 

c)  examining  the  feasibility  of  underpinning  the  new  disability  strategy  and  taking 
stock  of  the  experience  gained  under  HELIOS  II  ;  studying  the  possibility  of 
presenting  a new  legislative  proposal  to  the  Council,  taking  into  account  the first 
results  of  the  pilot  projects  and  preparatory  actions  undertaken  in  1997  and  the 
Amsterdam Treaty when it is ratified. 

17 

ISSN 0254-1475 

COM(98) 15 fmal 

DOCUMENTS 

EN 

04  05 

Catalogue  number  :  CB-CO-98-013-EN-C 

ISBN  92-78-30125-6 

Offiee  for Official  Publications of the European  Communities 

L-2985  Luxembourg 

18