Joe* is trying to ensure his five-year-old daughter, who has Down’s Syndrome, receives all the therapy she needs so she does not grow up to be a burden on society.

I know she can never be a lawyer or an accountant but she can find a job and be independent

But Inspire Foundation, where she goes for therapy, has to cut back on essential services due to lack of funds and he is worried about her future.

“I want Susie* to be independent. When I’m not here anymore I don’t want her to be a burden on her sisters or on society. I know she can never be a lawyer or an accountant but she can find a job and be independent... She is entitled to have basic support during life,” her father said.

Susie is one of the 250 children who will be affected by the reduction in services at Inspire – an NGO that works with people with disabilities – due to lack of funds.

The Times reported yesterday that Philip Rizzo, Inspire’s honorary treasurer, wrote to Prime Minister Lawrence Gonzi asking for his intervention in the matter.

A year ago, parents of children who attend Inspire had written to Health Minister Joe Cassar asking for his support.

Government funding to Inspire dropped in 2010 when it was decided that the direct therapy expenses were outside the education budget and should be paid for by the Health Department. This year, the Education Ministry provided the NGO with €800,000 to cover the educational expenses of 250 children. However, the Health Department did not fork out funds for therapy, including speech and occupational therapy and physiotherapy.

The department recently awarded Inspire a contract to provide occupational therapy services to the Child Development Assessment Unit (CDAU).

However, the government capped the budget for this service at €37,000 – an amount that would only allow for eight therapy sessions per child.

Inspire CEO Nathan Farrugia explained that Inspire functioned through a balance of government funding, parent contributions and fund raising. It needed €400,000 a year to cover therapy costs and was hoping to get at least half from the government.

Joe said that, during a meeting last week, Inspire informed parents that, to cut costs, it would employ full-timers instead of the current part-timer system. This meant therapy would be offered between 9 a.m. and 5 p.m.

But he cannot afford to take time off from work and does not want to pull Susie out of school as this would disrupt her routine.

Inspire also told parents it would be offering group therapy. But he knows this will not help his daughter who needs one-to-one attention.

“I don’t know whether I can stay in Inspire. The only other option is not feasible as it would require me hiring a home therapist and I can’t afford it,” he said.

CDAU did not offer enough frequent services for his daughter to make progress. The unit had come under fire when a government-appointed task force described its waiting lists as “unacceptable” and “excessive”. Children sometimes had to wait over a year for their first appointments.

“I can’t understand what is holding back the government. A sum of €200,000 might sound like a lot but it’s not for government,” he said.

*Names have been changed.