Cuba’s Inclusion Effort for Disabled

Patricia Grogg

HAVANA TIMES, August 6  (IPS) – Arnoldo Ramón Virgilio’s legs are of little use to him, but he has a way with words that more than makes up for any physical limitations.  He’s one of the outpatients at the “America Labadi Arce” Medical and Education Center, which provides health care and rehabilitation for people with disabilities in Santiago de Cuba.

“I’m president of the patients’ committee. I like poetry and making myself useful,” Virgilio told IPS as he prepared the envelopes that will be used to pay the staff their wages at the end of the month.

And exactly what does the president of the patients’ committee do?  “Every once in a while, we meet with the Board to present our problems and needs,” he explained.  “Right now our biggest problem is transportation.”

Transportation is a problem with which Virgilio is all too familiar.  Every day he has to make the trip from his home to the center and back on a battered old bus owned by the center, one of two such institutions that provide care for persons with severe intellectual and physical disabilities in Santiago de Cuba.

He first came to the center almost 30 years ago, when he was only seven and completely disabled as a result of cerebral palsy.  “Everyone thought I’d be confined to a couch my whole life, but with the therapy I received here I was rehabilitated and I learned to read and write. I’m also getting good at using the computer.  I like to learn,” he says.

Rehabilitation and Breaking the Bubble

He uses a walker to get around and prefers to do it without anybody’s help.  “I really like everyone here because thanks to what they do I’ve been rehabilitated,” he tells IPS.  The center has one nurse and one nursing assistant for every 12 patients, who number 150 in all, 114 of whom live there.

While it depends on the individual needs of each patient, their day typically includes recreational therapy, music playing sessions, exercise or sports, arts and crafts, speech and physical therapy, and even training to perform simple household chores such as preparing a snack, making the bed or setting the table.

“We try to give them a place in life, make them feel useful, within the capabilities of each individual,” says one of the therapists.  Hanging on the front door of the center is a large sign that reads: “We are ordinary people, just like you.”  The sign is part of a citywide campaign to raise awareness about people with disabilities.

The program, which receives funding from international donors, includes activities outside the center, such as taking groups of patients to agricultural street markets, as part of their insertion into economic and social life.  “By taking them out into the world, we broke the glass bubble they were in.  Their families were afraid that they wouldn’t be accepted.  But all those fears have vanished now,” social worker Estrella Rivero said.

As in the rest of the country, these vulnerable sectors of Santiago de Cuba’s population receive specialized care, primarily from the public health and education systems.

It is also an important part of the country’s efforts to meet the Millennium Development Goals (MDGs) – a series of targets agreed on by 189 heads of state at the United Nations’ Development Summit in 2000 to address major issues standing in the way of development, with a particular focus on the most vulnerable groups. The deadline set for meeting these goals is 2015.

“From the time a child is born and diagnosed with a potential disability, a multidisciplinary medical team is assigned to monitor the case,” Auria Martinez, head of the Public Health Ministry’s provincial program for people with disabilities, told IPS.

Dr. Maida Esparraguera, who heads the Seniors, Social Work and Disabilities Division, insists on the importance of family doctors, because they are in a privileged position to detect health risks in time and thus play a key role in primary care in the country.  “Patients are referred based on their diagnoses, so that appropriate action can be taken in each case,” she explained.

Educating for Inclusion

Social inclusion is also a concern of the special education system implemented for people with disabilities. “The key aim here is to prepare (children with disabilities) to actively participate in the labor market, in accordance with each person’s potential,” Rosa Alvarez Fundichely, the area’s assistant director for the province, told IPS.

According to data provided by Alvarez, there are currently 47 special education schools in Santiago de Cuba – some of them in remote mountainous regions – teaching a total of 4,883 disabled pupils 18 and under.

The system guarantees that all children with disabilities will receive an education even if they can’t make it to school, providing lessons at home for students who can’t leave the house, or at the hospital when students need to be hospitalized for long periods. These special needs youngsters receive education and training until they turn 18, but remain in the program until they find a job.

“In Cuba we see special education as a comprehensive system involving resources, support, various modes of assistance, and guidance for families, communities and mainstream classroom teachers, so that these students will receive the attention they need,” Alvarez added.

The program also includes 98 children with disabilities who are enrolled in mainstream classrooms because they live in very remote areas and must attend the school nearest to their home. “Families defend this form of inclusion, which enables them to have their special needs kids close to home,” Alvarez said.

According to Alvarez, there are plans to improve this strategy – which has existed for years – through a teacher training project funded by the Spanish Agency for International Development Cooperation (AECID), which targets educators who work with disabled students in ordinary classrooms.

Another AECID-funded project will contribute to improving conditions in some of the special schools and will provide enhanced training for specialized staff at the diagnostic centers, with the aim of guaranteeing timely detection of cases that require special attention.

A thorough study conducted in Cuba between 2001 and 2003 found that there were 366,864 people with disabilities in the country. According to specialists on the subject, the data gathered in the study made it possible to form a profile of this sector of the population and provided input for the design of preventive measures and strategies to enhance the quality of life of individuals with special needs.

Official sources say that services for disabled people in Cuba – which are free, as are all other health and education services on the island – are provided in accordance to a plan of action launched in 1995 with the aim of proposing, implementing and monitoring policies to address the issue and coordinate actions across ministries and state agencies.