Rights of Ageing People with Autism

In recent years, the European Union has undertaken remarkable steps to enforce equal 

rights for citizens with disabilities. The  EU has ratifed the United Nations Convention on the 

Rights of Persons with Disabilities in December 2010, and to date most of its Member States 

have also ratifed  it. The Convention on the Rights of Persons with Disabilities (UNCRPD)

is an international human rights instrument intended to protect the rights and dignity of 

people with disabilities. Parties to the Convention are required to promote, protect, and 

ensure the full enjoyment of human rights by people with disabilities on an equal basis with 

others.

 There are eight guiding principles that underlie the Convention and each one of its 

specifc articles:

1.  Respect for inherent dignity, individual autonomy including the freedom to make one’s 

own choices, and independence of persons; 

2.  Non-discrimination; 

3.  Full and efective participation and inclusion in society;

4.  Respect  for diference  and acceptance of persons with disabilities  as part of  human

diversity and humanity; 

5.  Equality of opportunity; 

6.  Accessibility; 

7.  Equality between men and women; 

8.  Respect for the evolving capacities of children with disabilities and respect for the right 

of children with disabilities to preserve their identities.

In this context, the rights of ageing people with disabilities should not be forgotten. People 

with autism, their families or representatives, and relevant organisations must gain a strong 

understanding of  their  rights and  governments must fulfl  their  obligations under  the

UNCRPD.

The intersection of age and disability has not yet been taken into account by the European 

Union and its Member States’ legislators and policy makers in the context of implementing 

the UNCRPD. Across Europe, people with disabilities currently face a gap between policy and 

practice, for example, in France – a country  which has ratifed the UNCRPD – a person over

the age of 60 years is no longer considered a person with a disability in relation to welfare 

payments. Instead, a person aged over 60 years is simply considered an older person, 

regardless of their disability and individual needs. In this case, government allowances are 

signifcantly lower and the individual may be required to pay up to 90 percent of their long-

term care costs. Therefore, in France, older people have an interest in becoming incapacitated 

before the age of 60 years.

 This gap in understanding and addressing the needs of older 

people with disabilities must be addressed as part of the implementation of the UNCRPD. 

Taking due account of the United Nations Convention on the Rights of Persons with 

Disabilities, the Council of Europe has adopted the Recommendation on ageing and disability 

in the 21st

 century35

 in 2009. In its recommendation, the Council of Europe indicates that the 

ageing of people with disabilities, particularly of those requiring more intensive support, 

compels Member States to adopt innovative approaches. In this regard, the Council of 

Europe notes that “the quantity and quality of community-based and residential support 

services in this feld have been unsatisfactory, especially for people with learning disabilities.

Older people with disabilities have sufered a double disadvantage, as seen in their relatively

low priority in health- and social-care policies and provision.”

With due regard for their own national, regional or local structures and respective 

responsibilities, the Council of Europe Member States should contribute to the creation of 

sustainable frameworks to enable greater quality of life in an inclusive society for ageing 

people with disabilities.

The following recommendations formulated by Autism-Europe take into account the United 

Nations Convention on the Rights of Persons with Disabilities, the articles 25 and 26 of the 

Charter of Fundamental Rights of the European Union (on the rights of the elderly and 

people with disabilities), as well as the Recommendation of the Council of Europe on ageing 

and disability in the 21st century. They are also based on Autism-Europe’s position paper on 

ageing that was published in 2003. These recommendations are addressed to policy makers 

as guidance in fulflling their obligations to older people with autism.

The right to an independent life and self-determination (art. 19 of the UNCRPD) 

People with autism and other types of disabilities requiring a high level of support have 

the right to make decisions for their own future, and to ask for  the provisions of the UN 

Convention on the Rights of Persons with Disabilities to be respected.

The right to maintain or improve the quality of health (art. 25 of the UNCRPD)

People with autism should be provided with the necessary means to ensure:

•  Prevention of health problems related to ageing, notably through regular check-ups and 
screenings;
•  Accurate diagnosis and accurate information on their specifc health condition;
• Prevention of problems related  to  their  specifc health conditions  (e.g. osteoarthritis due to stereotypy); 
•Treatment of individual health conditions.

• 
  

The right to maintain and improve communication and social interaction (art 9 and art 26 of the UNCRPD)

Older people with autism should be provided with access to adapted/alternative means of 

communication and visual information. 

Where possible,  inter-generational dialogue involving older people with autism should be 

fostered by:

•  Participation in cultural events and other leisure or sports activities with younger people 

in the broader community; 

• Facilitatation of contact between schools, youth organisations and structures for older 

people with autism. 

The right to appropriate intervention (art 26 of the UNCRPD)

Multidisciplinary assessment and co-ordination of interventions should be provided for 

people with autism throughout their lifespan, including during old age, while taking into 

account:

• The functional abilities of the older person;

•The interests and wishes of the older person and his/her family.

Individualised support plans for people with autism should be designed and put into practice 

with the main objectives of:

• Improving and maintaining skills for autonomy in the home or residence;

• Improving and maintaining social skills in community activities

The right to have services to provide a good quality of life (art 26 of the UNCRPD)

Older people with autism should be fully and directly involved throughout the process of 

designing, implementing and evaluating services that aim to meet their needs. Families, care 

providers and friends should also be involved in these processes, as appropriate services 

should be the result of a dialogue between relevant stakeholders. A diversity of accredited 

services must also be available. 

Service users with autism and their families/representatives must have permanent contact 

and dialogue with the staf, the opportunity to express  their needs, priorities, hopes and

desires, and to participate fully in the development, monitoring and review of individual 

support plans.

In order to achieve these goals, services should provide specifc,  qualifed interventions

consequent to contemporary knowledge in the feld of autism. Services should also have

a stable and reliable structure that adopts quality standards related to the quality of life 

of the users and is based on a set of rules defning responsibilities, day-to-day routines and procedures. 

These measures will enable  family and staf members  to identify the  individual needs of

people with autism. These measures will also provide a way of reducing the risk of isolation 

and exclusion.

The right to education and lifelong learning (art 24 of the UNCRPD)

Relevant services must provide a learning environment and education facilities adapted 

to older people with autism. For people with autism, throughout their lifespan, education 

represents a lot more than a basic right. Lifelong education is necessary to compensate 

for the great  difculties that people with autism have in extracting meaning  from simple

experiences (something most other people are capable of without specifc educational

support) and to attain the highest possible degree of self-sufciency.

The right to housing facilities (art 19 and 23 of UNCRPD)

People with autism must be supported to remain in their own homes as long as they can, 

like other ageing people, or live in places where they were accustomed to spending time 

before retiring from ’active life’. Preparation for the changes in living arrangements must be 

carefully planned. New environments must be adapted to the specifc needs of each person with autism.

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