Table 2 Availability of social services
From: Social and medical needs of rare metabolic patients: results from a MetabERN survey
Question and answer options | % |
|---|---|
Is the patient in school? | |
Yes | 48.5 |
No | 51.5 |
What type of school does the patient attend? | |
Public school | 65.5 |
Public school specifically designed for children with assistant needs | 16.0 |
Private school | 9.4 |
Other | 9.1 |
Does the patient suffer from intellectual disability? | |
Yes | 28.9 |
No | 71.1 |
Are the services of a social worker guaranteed? | |
Yes | 27.8 |
No | 38.2 |
I do not know | 34.0 |
Has the patient obtained civil disability? | |
Yes | 62.8 |
No | 37.2 |
On the board that determines civil disability, is the presence of an expert doctor in rare diseases required? | |
Yes | 29.8 |
No | 32.7 |
Do not know | 37.5 |
In case of a disabled person in a family, is there any economic support provided to the disabled person by the local, regional or national government, such as: | |
Discount on bills, taxes, etc.? | |
Yes | 25.5 |
No | 51.2 |
I do not know | 23.6 |
Allowance for independent living? | |
Yes | 20.0 |
No | 39.0 |
I do not know | 41.0 |
Allowance for non-self-sufficiency? | |
Yes | 33.9 |
No | 30.0 |
I do not know | 36.1 |
Are job opportunities made available in the public sector for patients with various types of limitations? | |
Yes | 36.2 |
No | 11.9 |
Do not know | 52.0 |
In the workplace, is part-time/flexible schedule possible (e.g. home-based work)? | |
Yes | 16.0 |
No | 16.5 |
Do not know | 67.5 |
Have central or local governmental institutions developed “After Us” projects? | |
Yes | 5.8 |
No | 24.2 |
Do not know | 70.0 |