Hearts, heads, and health

Afam sat beside Ikenna on the green couch in Hope House Initiative’s spacious reception area. Holding a picture book, Ikenna pointed at different animals and Afam excitedly mimicked the sound of each. Ikenna gently prodded, “What animal is this?” and Afam, 29, responded, slightly missing the pronunciation. Together, they repeated each animal’s name with Afam intently watching Ikenna’s mouth and copying the motion, until it sounded more accurate.

Two other staff members and the center’s director, Baerbel Jaja, observed the interaction and applauded Afam once he finished. With a giggle and a wide smile, he replied, “Thank you.” Jaja immediately noted to the staff they will need to include speech therapy in Afam’s summer program at the special needs center. She also observed signs of Down syndrome and mild autism, which Afam’s aunt later confirmed.

Hope House Initiative operates a therapy center for children and adults with autism, Down syndrome, and other special needs. The center follows an academic calendar, but also runs a summer program, which Afam attended. In Nigeria the burden of care rests mostly on private-run facilities and nonprofits: Hope House Initiative began in 2005 and now has 24 enrolled participants and 11 staff members. Staff members observe each student’s needs and challenges and produce individualized plans.

Activities range from learning basic life skills such as feeding or bathing oneself to physiotherapy and speech therapy sessions. As a nonprofit, Hope House operates primarily from an annual endowment of about $100,000. The donation fund covers the organization’s rent for its two-story center, its staff salaries, and the expenses for tending to its students, including their transport costs. The center also has received donations in the form of therapy services and equipment, allowing parents to pay a $1,000 annual fee.

Many people shy away from getting help, while others keep their children with disabilities in the house out of shame.

But with Nigeria’s economy now plunged into a recession, several sponsors have started to pull out. The person who pledged to donate this year’s rent has withdrawn his contribution, and the center might have to move out by the end of the year. “We are really struggling to survive right now, but we’re hopeful,” Jaja said.

In 2007, Nigeria’s National Assembly passed a disability bill to ensure people with disabilities have free access to healthcare, education, and other social and civil services, but the bill has remained unsigned through several administrations.

Last month, Jaja received a 2015 printed handout on Nigeria’s national policy on special needs education in Nigeria at the Federal Ministry of Education. The policy is pushing for a commission that will ensure the different levels of government fulfill their obligations to people with special needs. Some of those obligations include budgeting for free education at all levels and an additional 20 percent grant that could be used in nongovernmental special needs centers. Professor Izuka Ihenacho, chairman of the policy drafting committee, also helped prepare the pending disability bill. He explained that the policy and the bill are both different ways of ensuring the government not only creates but also enforces its policies. “The government should take most of the responsibility for approved special needs cases,” Ihenacho said.

For Jaja, the policy encompasses most of what she’s been working toward. She had previously worked on another bill with other special needs advocates that also pushed for a similar commission. Jaja said the benefits of the policy could directly resolve the center’s current financial crisis, if it’s implemented. “We would make sure our parents are registered to get their 20 percent grant,” she said.

As some of these private centers battle with the financial crunch, they also have to face the stigmas surrounding mental health. Traditionally, families either killed children born with visible disabilities or abandoned them, Jaja said. Now, many people shy away from getting help, while others keep their children with disabilities in the house out of shame. One center for mental disabilities, Synapse Services, founded in 2007, barely had any patients for the first six months and even considered shutting down. A Synapse psychologist, Otefe Edebi, said, “The attitude was medical services wouldn’t be of much help.” When Grace Ojeamiren-Bamigboye, a speech language pathologist, started a private practice, months went by without many people coming in for evaluation.

But some of the advocates are working to counter that. Jaja invited a trained psychologist to run a one-day session on applied behavior techniques and invited other inclusive educators to attend. Ihenacho this month organized a public seminar, where he hosted mental health practitioners from other countries to share the benefits and impacts their services provide. “The number of people becoming aware is on the increase,” Ihenacho said.