The president of the Board of the Organization “Embrace of Hope” for people with Cerebral Palsy and Other Disabilities, Giula Pitsiali, warns in her article about a serious regression in the discussed bill on social participation and independent living. She emphasizes that disability is mistakenly treated solely as a need for care, leading to the restriction of fundamental rights and ignoring the real cost of living for people with disabilities.
On the occasion of the final session of the Parliamentary Labor Committee before the article-by-article discussion of the bill on “Social Participation, Inclusion, and Independent Living,” the Organization “Embrace of Hope” publicly submits its serious reservations and well-documented suggestions.
The separation of the disability allowance from the Minimum Guaranteed Income (MGI) is a necessary reform, which, however, is not implemented in practice. The Deputy Ministry of Social Welfare attempts to implement it in a way that distorts the concept of disability and limits fundamental rights. The most worrying element is that the disability allowance is turned into an allowance for care and personal assistance, completely ignoring the real cost of disability.
Disability is not just care. It is a cost of living, obstacles, needs for participation, independence, and dignity. However, instead of enhancing these elements, the bill leads to a framework controlling choices and restricting human dignity.
Main points of concern are as follows:
• The disability allowance disappears as a concept and is replaced by a care allowance without recognizing the cost of disability. It is linked to documentation of expenses without any increase as promised by the deputy ministry and those processing it.
• Personal assistance and care are considered a single allowance, although they are distinct terms and cannot be arbitrarily provided by one service, leading to exclusion from other independent living services (e.g., social escort, interpretation).
• The allowance is linked to documentation of expenses, creating a risk of cuts for needs that cannot be proven with evidence.
• Excessive power is given to the competent authority to reduce or replace the allowance with services, limiting individual freedom of choice without even giving them a chance to explain.
• Age discrimination persists (e.g., severe mobility disability 12–65 years).
• Unjustified restrictions are imposed on service providers, such as excluding relatives up to 4th degree.
• The appeal process is not independent (examined by the same Deputy Ministry) and is time-consuming (90 days).
Our Organization’s position is clear: We demand the release of people with disabilities from MGI, which must be done clearly and correctly.
• The mobility allowance is given only to those who work or study, excluding other forms of social participation.
• Participation in day centers is subsidized but not in other inclusive community activities.
• There is no substantial provision for independent living outside structures, resulting in people with severe disabilities being led to closed structures and institutional solutions.
• The cost of supported living is covered for a very limited number (about 60), while categories such as visually or mobility-impaired individuals are excluded. Those who choose to live independently remain without sufficient support.
• Evaluation for equipment and aids continues to exclude GESY professionals monitoring beneficiaries, causing delays, errors, and mismatches.
• Equipment and wheelchair grants do not fully cover costs, leaving individuals without basic means while car allowances remain very low.
• Individuals over 65 are led back to MGI, creating a vicious cycle of dependency even when they have certified severe disabilities and increased support needs.
• There is no provision for increasing allowances for existing beneficiaries with severe disabilities (e.g., quadriplegia, blindness, paraplegia), who receive the same amount for decades despite significant increases in living costs.
The essence of the problem
The inadequacy of available resources attempts to be covered by restricting rights. Instead of strengthening provisions and upgrading rights,, the concept of disability is limited, control over individuals imposed, transferring responsibility onto beneficiaries themselves.
We suggest
- The maintenance of severe mobility disability allowance and special grant for blind individuals as separate allowances covering part of disability costs.
- A clear separation between home care and personal domestic assistance.
- The immediate exemption of €368 from MGI income criteria and transfer €480 from MGI to certified non-working beneficiaries as applies to children.
- The full compliance with UN Convention on Rights of Persons with Disabilities provisions in new legislation.
In conclusion
* Independent living cannot exist without resources. * Rights cannot be limited for resource-saving reasons.
* Disability allowance isn’t care. * Disabled individuals need more than care for dignified living. * Personal assistance essential separately covered under Article 19 Convention. * Disability costs must be recognized practically.
* This legislation isn’t product meaningful consultation with representative organizations.
* Children’s voices absent. * Blind people’s voices absent.
* Mobility-impaired voices absent.
* Early childhood intervention missing. * Respite centers missing caregivers relief.
A lot missing.
The most worrying thing though,
is that this bill doesn’t fill any gaps but removes existing rights.
