Title: Support for children, young people and adults with Autism Spectrum Disorder and their carers
Country: PORTUGAL
Form(s) of actions:
Petition
Type(s) of actions
Awareness raising, promotion of specific solutions, change of Law.
Summary:
The petitioner describes her family’s struggle to care for her son, a child with Autism Spectrum Disorder (ASD) and Global Developmental Delay.
The petition expresses the claims of a mother for a better support of his autistic child. The claiming process refers to:
– the need of an increasing ammount of resources and a more efficient use of them;
– the right to be included;
– the need to empower service users (especially, health and education);
– the need to increasing choice of the autistic young people, but also of the their parents and caretakers;
The petition was formally admitted. Information was then requested from different entities and the petitioner and other mothers were heard in a hearing by 12 deputies from different parties.
Aim:
Petition addressed by a mother of a child diagnosed with Autism Spectrum Disorder.
Main stakeholders:
A mother of a child diagnosed with Autism Spectrum Disorder.
Families, Associations and confederations of people with disabilities, politicians from different political parties.
Included voices of the families of the children with autism.
Issues addressed:
As said, the petition expresses the claims of a mother for a better support of his litle autistic child. The issues addressed in the petition refer to the need of:
1. Specialized training for parents of children with autism and professionals (doctors, educators, caregivers) who support these children (e.g. free training for parents in sign language or assisted communication technology);
2. Reinforcement of social and educational support services (e.g. activities in occupational activity centers and training offers in professional resource centers; right to a permanent support technician within schools; availability of playgrounds suitable for children with reduced mobility within schools and us;
3. Creation of regulation/inspection mechanisms (e.g. regular inspections of schools to confirm that the rights of children and adolescents with ASD, regulated by law, are being properly fulfilled);
4. Reinforcement of financial support resources and improvement of their efficiency (Ex. Therapies reimbursed by the State at 100%; Increase in the support subsidy for third parties; modification of the way in which disability and dependency support subsidies are combined; increase in the subsidy for disability bonus that allows parents/caregivers to support the extension of therapeutic support for their children;
5. Improvement of working conditions that facilitate parents’ support for children with autism (e.g. creation of solutions for vacation time for autistic children/young people/adults that allow parents/caregivers to fulfill their working hours; offer to young people/adults with autism of at least at least 1 week/year in boarding school with recreational activities and necessary support for parents/caregivers to rest;
Outcome:
The petition was formally admitted. Information was then requested from different entities and the petitioner and other mothers were heard in a hearing by 12 deputies from different parties.
Sustainability:
The petition letter, after being addressed to the President of the Assembly of the Republic, was forwarded to the Education, Science, Youth and Sports Committee, with the knowledge of the Labor and Social Security Committee. A preliminary analysis was carried out to assess its admissibility and the parliamentary activity database was consulted to identify legal initiatives that could be related to it. In total, 9 initiatives were identified (approved bills, another petition and 3 draft Resolutions, related, for example, to strengthening rights and conditions for monitoring children with chronic, oncological illnesses or those resulting from an accident; expanding protection in parenting to parents with children with a disability, rare disease or oncological disease and decision to pay 100% of the subsidy to care for a child with a disability, chronic illness or oncological disease). The petition was then formally admitted. Information was then requested from the following entities: 3 members of the government in office (Health, Education and Social Security); 11 associations and federations of associations (disability and education areas). Seven of these entities responded. The petitioner, plus two mothers of children with autism, was heard in a hearing by 12 deputies from different parties.
The Petition entered the Assembly of the Republic on January 28, 2020, only with 1 signatory . On February 13, 2020, it was sent to the Education, Science, Youth and Sports Committee, with a recommendation that the Labor and Social Security Committee be informed. On March 10, 2020, she was admitted. On July 2nd, the petitioner and 4 other parents were heard, and information was requested from various entities, services and organizations, which must respond within 20 days. A report was prepared dated July 2, 2020. The case was archived on July 8, 2020.
Link(s): https://www.parlamento.pt/ActividadeParlamentar/Paginas/DetalhePeticao.aspx?BID=13401
Data source: National Parliament site
