NGO Report: Fundatia Inocentia

Mike Carroll, a photographer for the Boston Globe, was among the first to document the pediatric AIDS epidemic in Romania.  He was with a nonprofit relief group sent to investigate the public health needs of Romania after the fall of Ceausescu. After meeting after meeting with doctors who denied that there was a public health crisis of any kind, Mike wandered the grounds of the hospital unaccompanied. “Meetings in offices and conference rooms are not the stuff of great photography,” he explained.

                        A young doctor in a soiled lab coat got his attention, “We have been waiting for you. Come in before they see you. I want you to show the horror of what we have been living with.”  He took Mike to the morgue where there were children’s bodies piled like stacks of wood.  Before the fall of Ceausescu, agents from the secret police would come every night to remove the bodies. After the fall, there was no disposal.

                        He explained that he had secretly obtained blood samples of the victims before the collapse of communism.  A friend in the veterinary school who studied retroviruses tested the samples to conclude that they were infected with a retrovirus, most likely AIDS.  Not sure how AIDS spreads, he said, “We feel we will all die of AIDS now, and we can’t be in collusion with a government that is this criminal.”

                        Mike went to get the others on the relief group, who spent the rest of the day going unaccompanied from room to room observing and assessing children. “Full blown AIDS, not AIDS symptomatic,” one doctor kept repeating as he examined children in their cribs.  It turned out that AIDS was the tip of the iceberg, as many of the institutionalized children were diagnosed with Hepatitis B and C, tuberculosis,  and meningitis.

                        Mike Carroll published his photos in the Boston Globe in March, 1990, and was immediately overwhelmed with New Englanders who wanted to help the orphaned children of Romania.  These early responders met in Mike Carroll’s living room to discuss what they could do, and started a drive to collect children’s toys and medical supplies to send to Romania.  This was the beginning of the Romanian Children’s Relief.

The Romanian Children’s Relief, formed in Romania as Fundatia Inocentia, is among the oldest NGOs operating in Romania.  Their program operations have evolved over the 20 years of operations from providing toys and medical supplies, which were poorly distributed at the Romanian end, to now providing foster care for abandoned special needs children, helping young mothers at risk of abandonment, providing early childhood assessment and intervention and doing early childhood literacy interventions.

                        The NGO is a model of an impact-driven NGO.  Their annual report is an example of clear outcomes that many US non-profits can follow.  They evaluate the outcomes of each program and, over the 20 years, have modified or ended ineffective programs to make things better for abandoned children. In contrast, many US non-profits often “add to” existing programs, rather than discontinue ineffective programs.                   

They currently have five programs to help abandoned and disabled children in Bucharest and Bistrița.

o      The “Child Life Program”  (2 programs: Bucharest and Bistrița) provide volunteers and a play room for hospitalized children.  The volunteers try to involve unaccompanied children in games, art and craft activities, or educational activities.  The volunteers provide interaction and stimulation for abandoned infants (ages 0-2 years) to help them develop normally.  The program provides information on “shaken baby syndrome” to new parents, utilizing a computerized doll that showed the type of brain damage that can occur.  The program seeks to identify new-borns who are at risk of being abandoned and intervene with help and support for the new mothers. Impact: due to the combined efforts of the foundation, the county social services agency, the child protection agency, and the hospital, Bistrița/Nasaud county has reduced abandoned infants from approximately 200/year in 2005 to 35 abandoned infants in 2009.

o      “Me and My Family” program provides assessment/ intervention and recreational activities for disabled children in foster homes and in a special needs school in Bistrița/Nasaud county.  This county government has taken the lead in transforming the care of abandoned disabled children from institutional, total institutional care to foster family care.  Fundatia Inocentia helps the county government recruit and train foster families to care for special needs children.  The foundation’s outreach workers provides additional physical and occupational therapy, and leads a support group for foster parents in their village. Impact:  The county residential center for disabled children has reduced its population from approximately 300 children to around 50 through creating foster care placements in the county. The current residents of the center, ages 8-17, live in family groups of 8-12 children in an apartment with an adult caretaker and educational specialists for each group.

o      “Early Literacy” program links volunteers with children in foster care, orphanages, and hospitals who read to the children and encourage literacy.  They show the parents, many of whom are illiterate themselves, how to encourage reading with their preschoolers by using picture books without words. During their annual “Reading Day” celebrated at a local library, participating preschoolers received a free picture book to take home with them.

o      The “Early Intervention” program offers activities for developmentally delayed Roma children ages 0-3 to help them access social services and prepare them to enter school.  This is their newest program, starting in October, 2009.  In addition to reading to the children and playing educational games, the program provides information to parents on children’s development, hygiene, and shaken baby syndrome. 

I met my first abandoned baby this week.

I met my first abandoned baby this week.  Daniel, four months old, was born prematurely, so he was the smallest of the four in the abandoned baby nursery.  When we walked in my first thought was, “Where are the nurses?” as the nursery was empty except for the four babies.  The babies were all staring at the ceiling, awake, but not moving, no noise.  

When we began talking to the nurse who escorted us, Daniel started stirring so Nancy picked him up. As she started talking and cooing with him, he turned his face away.  It took several minutes before he turned toward her voice, and then his gaze locked on her face and wouldn’t let go.

These babies have Attachment Disorder and they haven’t even left the hospital. 

                        “When mothers abandon their infant, why do they do it?” I asked Tibi, the Outreach Worker for Fundatia Inocentia.  Tibi has worked as a social worker with abandoned children for 15 years. 

                        “Mostly economic reasons.  They are too poor to have a home, to take care of a baby.”

                        Homelessness, drug abuse, prostitution, migrating to Western Europe in search of work were all cited as reasons mothers abandon an infant.  He estimated about 20% of the abandoned children he has worked with were Roma children, contradicting a common myth among Romanians.  That means 80% were ordinary Romanians who fell into hard times. 

Many Romanian attitudes toward infants don’t seem to acknowledge attachment needs.  In Romanian hospitals babies are routinely separated from their mothers for the first 48 hours, the period of time when a mother’s hormones are primed for attachment.  Wealthy mothers who understand western maternity wards can pay extra to keep their baby in the room.  So poor mothers who may be at risk of abandoning their newborn don’t even have a chance to change their mind.

The Romanian child protection laws on abandonment and adoption don’t support healthy infant development either.  A child must go for 4 months without a visit from a family member before it can be declared abandoned.  Until the child is legally declared abandoned, he or she cannot leave the hospital.  In America, if a mother left the hospital without her infant, Child Protective Service would be involved within days and the child would go to foster care where someone would be holding, cuddling, and talking to it.

           Further, Romania changed the adoption laws in 2005 to make it harder to adopt an abandoned child.  For that child to be adopted the hospital social worker must find the mother, have her appear before a judge, and she must consent to the adoption.  So to recap, 1. mother is absent for 4 months, 2. then the hospital must track her down, 3. schedule a hearing with a judge, make sure she shows up, and 4. she must give permission to adopt the child. Many mothers say, “I don’t want the child, but I don’t want someone else raising my child.  Let the state keep it.”   So the welfare of the child hinges on a person who has neglected the child for the past year.
            At the best, this process can take a year, and during that time the child is in a “total institution,” a baby warehouse with little stimulation.  Most abandoned children become wards of the state and it is two years before foster care will be available.  

NGO Report: Responding to the Children's AIDS Epidemic

Asociatia Benone in Turgu Mureș helps people who are infected with HIV navigate the bureaucracy necessary to obtain disability benefits, find information and social support, and combat discrimination due to their disease. Parents whose children were infected by AIDS founded Asociatia Benone in 2001. Asociatia Benone is affiliated with more than 20 similar AIDS advocacy organizations through the National Union of the Association of People Affected by HIV/AIDS (UNOPA: Uniunea Națională a Organizaților Persoanelor Afectate de HIV/SIDA). These parents lobbied the Romanian government to provide lifetime disability benefits for children infected by AIDS.

            Their children contracted AIDS as a result of non-sterile practices among public health workers.  During the Communist era, public health nurses were issued one syringe each year to use for inoculations.  During the 1980s when the AIDS epidemic was spreading, many children were infected by public health nurses reusing non-sterile syringes for their childhood immunizations. 

The beneficiaries that I met were ages 21 and 24, which, at the fall of Communism in 1989, would make them not yet born and 2 years old.  They were diagnosed age 8 and 9 (in 1998 and 1996) respectively, after many childhood illnesses and infections.  This means that the public health system was not that much improved after the fall of Communism, since they contracted the virus after the fall.

During the class presentation that I attended, each beneficiary began his talk, in Romanian, of course, by saying, “Hello, I’m ___________; I am a positive person.”  They went on to describe how they lived with a chronic disease, emphasizing how they make the most of each day.  I thought that the play on words was an inadvertent consequence of my translator.  As I learned more about the organization, I found out that their monthly newsletter is called “The Positive Journal.”  An important part of their peer support is to reinforce a positive attitude that makes the most of every situation that presents itself, because, as one said, “you never know if you’re going to feel better or worse tomorrow, so you have to get the most out of today.”

A great life lesson.

My Motivational Wrist Band: NGO Report

I am using the slogan of Temerarii, a Romanian NGO that serves pediatric cancer patients, as my motivational slogan on my half-marathon in Prague.  When a new pediatric patient is admitted in the oncology hospital, a Temerarii volunteer, usually themselves a former childhood cancer survivor, welcomes them to “the club” with the wristband that says in Romanian, “I know that I did it, you can do it, too.”  This gives the new cancer patient hope that they, too, can overcome childhood cancer.

I met with Shajjad Rizvi, the Director of The Little People Romania and Temerarii, soon after I decided to run in a half-marathon.  I felt that the next step in my own cancer recovery was to start running again.  I needed a goal to motivate me, and since many of my friends have run in marathons or half-marathons, I thought, “I can do it, too.”  When Shajjad showed me the wristband and told me how it was used to motivate and give hope in their NGO activities, I had to have one.  On my recent trip to Texas I brought wristbands to many of my family and friends to enlist their help in keeping me motivated.

Here’s some information about the NGO:  Their main objective is to provide care and support for children and young people affected by cancer. They have Patient Assistance Programs in four hospitals around the country,  Cluj-Napoca, Timisoara, Bucharest, Iasi (pronounced Yah-sh). In two of those hospitals they have play therapy rooms to provide a child-friendly, non-restrictive environment for children after their treatments.  Last year they provided over 100,000 hours of volunteer service to children cancer patients in hospital or in out-patient or post-treatment support activities. The Director, Shajjad Rizvi and his wife, Katie, a clinical psychologist, volunteer their time for this effort.