Manuel Echevarria (left, front) was taken by child services from his family in August 2012 after a series of events that began when he was taken off Medicaid's disability coverage by a caseworker, in error, and the family lost home nursing care. Manuel, who has cerebral palsy and complex medical needs, including a g-tube and seizures, was returned to his family three months later. His parents were acquitted of neglect, but never received an apology. The family lives in Indianapolis and are pictured on a Disney holiday. I spoke with Manuel's mother Angelic. Manuel's nickname is Bear Bear.
BLOOM: Tell us what happened.
Angelic Echevarria: My husband and I were both working and Bear had 12 hours a day of nursing care. I worked during the day and my husband worked nights. Our caseworker took Manuel off traditional disability Medicaid and put him on Medicaid for a typical child. This meant we lost our nursing care and my husband's pay cheques were abruptly garnished by our hospital. We eventually lost our house and I had to resign from my job because Bear's medical needs were so great.
BLOOM: And shortly after this Manuel was hospitalized?
Angelic Echevarria: Yes, Manuel was hospitalized with a serious stomach virus for one-and-a-half weeks. The whole family was staying across the street at the Ronald McDonald house. We had lost our town house but were to move into special-needs housing in a week. The doctors and social worker had a conference to discuss Manuel's care and other issues.
BLOOM: What did they suggest?
Angelic Echevarria: They felt we needed a break because Bear's Medicaid coverage hadn't been figured out and we had no home nursing. They suggested Manuel go into a respite facility for two weeks.
He went there for the weekend but when we visited we found him by himself in a ball pit. The nurses were talking and eating in a back corner and not interacting with the young people. My son can barely turn over on his own or keep his head up. I was concerned about his safety and asked to take him home. We couldn't get in touch with the hospital social worker because it was the weekend. The respite nurse said we could take him and that they had never seen a little boy so well taken care of.
We took Bear back with us to Ronald McDonald House. We planned to drive to my parents' house in Chicago and stay there until we could get into our new home. Instead of the social worker giving us a chance to explain about the ball pit and Manuel's safety, she called on Monday morning and said child services had been called. I thought they would speak to us and listen to why we took Bear out of the respite place. But never, ever did I think they would take him away.
BLOOM: What happened next?
Angelic Echevarria: They came to Ronald McDonald house with the police and an ambulance and told us to sign a document and we got to kiss him and try to explain why he was being taken away. They took him back to the hospital. They told us it would take time for the court date but we could visit him. We had timed visits with him in a hidden part of the hospital where we were watched through glass. It was heartbreaking to be treated like a criminal. After a couple of days Manuel was taken to a new respite facility two hours away.
BLOOM: Why were you charged with neglect?
Angelic Echevarria: I had failed to listen to the doctors' orders and taken him out of respite early, and we were considered homeless, even though we were able to live with my family until our special-needs housing was ready. I was told I was a selfish mother who used the hospital for her own gain, because I had asked the social worker for parking passes and help with medical supplies. My husband and I were made to look like monsters.
BLOOM: What happened next?
Angelic Echevarria: We were out of our minds with grief. We took our older kids to their grandparents' house to live because we wanted them to be safe and happy. Lawyers told us it was important that my husband keep his job, so he and I lived in our truck so he could continue to work. I prayed very often just to keep my sanity.
BLOOM: How were you able to see Manuel if the respite facility was two hours away?
Angelic Echevarria: The facility was close to a river and they rented out log cabins, or we could pitch our tent and camp. We got there with our other children on Fridays and wouldn't leave until Monday, early morning. The camping helped us to cope because we made campfires with our kids, roasted s'mores or looked at the stars. It helped us so much to bear the pain of Manuel being right down the road and not being able to be with us. Once the staff got to know that we loved Bear they became very nice to us. They even helped to raise money so we could stay an extra night at our cabin and pitched in for toys for Bear's birthday.
BLOOM: How did you get Manuel back?
Angelic Echevarria: To get Bear back was like the fight of our lives. We had to ask for letters from his doctor in Chicago, where we used to live, and former nurses. Bear did have home nursing for a short time in Indianapolis so the supervisor who had come to my home on numerous occasions wrote a letter stating that there was no neglect of Manuel or my four older kids. Most marriages are already fragile with a special-needs child but when you have court every week and people accusing you falsely that's the most horrific thing you could do to a family. BLOOM: What impact did being in respite have on Bear?
Angelic Echevarria: Bear would cry or get very angry. This facility tried their best, there were some great women, but of course it wasn't home and he wasn't with his family so it was very hard on him.
BLOOM: How did this impact your other children?
Angelic Echevarria: My children, Jose, 12, Angelina, 11, Mariah, 9, and Amarie, 7, were very affected. They would cry for hours. We would take them to Easter Seals for SibShops to help them speak about their feelings and we're still looking into more therapy to help them.
BLOOM: How did you cope?
Angelic Echevarria: I coped by praying. Somehow I felt like Job in the Bible. I didn't understand why and how this could be happening because I feel like I'm the best Mommy ever. My husband and I would lean on each other we would cry or scream, whatever we had to do to let it out. Being able to rent a cabin to be closer to Bear on the weekends helped. My sister and best friend and godmother helped with prayers and support.
BLOOM: When Bear was allowed to come back, were you given an apology?
Angelic Echevarria: My husband and I were acquitted of neglect charges, yet we were not given an apology. We had to see the social worker at the hospital who called child services. All she said was 'You all have been through a lot' and that she was changing departments.
BLOOM: Is Manuel now on the correct Medicaid plan?
Angelic Echevarria: Yes. Now his medical bills are paid and he receives nursing services, but just for school. I am fighting to get my job back. We've changed hospitals.
BLOOM: How is Manuel doing now?
Angelic Echevarria: He's doing the best he can, but his seizures have been horrible lately. We take it one moment at a time. My little fella is a happy Bear Bear. He loves his playdough and he loves his teacher and classmates in kindergarten. He loves his sisters and brother so much. They give him tons of kisses and hugs. We learn to love each and every moment we have.
BLOOM: Why are you sharing your story?
Angelic Echevarria: I hope it inspires people and opens up discussion as to why this keeps happening to good parents. Our caseworker told us of three other families whose children were taken unnecessarily by this children's hospital. I believe a lot of good parents whose children have special needs are being targeted for no real reason. Our prosecutor said 'If you're not a certain colour, don't have a professional degree or aren't husband and wife then they don't want you to come to their hospital.' We'd like to find other families this has happened to and unite in a class-action lawsuit.
ReelAbilities is a New York film festival that gives voice to stories about people with disabilities. This Friday Willowbrook (above) is being screened. It's a disturbing account of researchers who injected active hepatitis virus into healthy children with intellectual disabilities when they were admitted to an institution as part of a medical experiment.
"...most ethicists see Willowbrook as an example of medicine run amok, in which overzealous researchers did harm to an exceptionally vulnerable population," says this recent Well blog in The New York Times.
One can only surmise that these doctors felt that children with intellectual disabilities fell outside the protections afforded children with regular IQ.
The other night I found Ben in bed, his face behind a book that was jiggling about because he was laughing so hard.
The book was The Tale of Benjamin Bunny by Beatrix Potter. It's a tiny hardcover book my dad read to me as a child. My dad was a wonderful storyteller and hearing him read was like listening to music. On the floor beside the bed was The Tale of Peter Rabbit. Ben has always loved the antics that Beatrix Potter's animals get up to. He wouldn't let me see what page he was on, but I figured it was something about Benjamin and Peter getting into trouble in Mr. McGregor's vegetable garden.
After he went to sleep I flipped through the book and came to this illustration of old Mr. Bunny (Benjamin's father) lunging at the cat who's been sitting, for five hours, on a basket under which Peter and Benjamin quiver.
Old Mr. Bunny had no opinion whatever of cats. He took a tremendous jump off the top of the wall on to the top of the cat, then cuffed it off the basket, and kicked it into the green-house, scratching off a handful of fur. The cat was too much surprised to scratch back.
That was probably the page I thought.
Ben has always loved the absurd, the over-the-top, the darkly humorous.
When I saw him that night, I couldn't imagine anyone more happy or caught up enjoying a moment.
And who am I to question that his way of life is any less valuable because of his IQ, I thought, because he's not thinking what average 18-year-olds do.
Today is the fifth year of Spread the Word to End the Word, the campaign by Special Olympics to get people to stop using the word "retard" because it's a demeaning slur against people with intellectual disabilities.
I'm tired and not a little disheartened with the arguments put forward, often by the brain elite, that when words like retard, imbecile and moron are used, the speaker doesn't have a person with intellectual disability in mind.
Come on.
Everyone knows that these words have a particular zing because they were once descriptors for people with intellectual disabilities. As the most stigmatized, hated and feared group on earth, calling someone a retard, imbecile or moron is the ultimate put-down.
I remember being asked to fill out a survey at a large children's hospital about prenatal testing. The survey was being conducted by students who were training to be genetics counsellors.
One of the questions asked whether, as a parent, I would terminate a pregnancy because the child had mental retardation and would have no quality of life.
The question was problematic because of its simplistic construction, equating low IQ with a wasteland worse than death.
High IQ is not correlated with a good and satisfying life, and neither can low IQ be assumed to suck the richness out of life.
So next time you're looking for a word to heap ridicule on someone—stop... and think—and leave people like my son alone.
Want to support the Malaika Mums sewing project and Malaika Kids special-needs school in Kenya we wrote about in BLOOM (click on issue top right). Comfort the Children International, based in Austin, Texas is participating in a 24-hour fundraiser called Amplify Austin. Go to Amplify Austin and type CTC International in the search box to support these Kenyan projects for families of children with disabilities. Open till 7 p.m. March 5. Photo by Chelsea Dee.
About a year ago, I contacted Canadian researcher and developmental pediatrician Dr. Peter Rosenbaum. I wanted to ask his advice on the pros and cons of walking in children with cerebral palsy. My son Alfie, 7 (above centre), has significant challenges because of cerebral palsy. He wants to walk, despite using what many call an abnormal pattern of movement. Alfie LOVES walking with our support or a walker. It isn't functional, we’re told, but his slow and excited steps give him a hard-to-beat feeling of independence that he may not experience when he's older. Our government-funded physios say walking is bad for Alfie's hips because his tight muscles pull him into an unusual gait. They say Alfie should spend most of his time in a seating system or wheelchair or use a standing frame (which Alfie hates). On the other hand, private physios say Alfie should have a walker because he can take steps and enjoys it. In trying to decide whether we should encourage Alfie to walk, Peter suggested I read a paper he and a colleague had written called The F-words in childhood disability: I swear this is how we should think! The F-words are function, fun, friends, family, fitness and future. The words are based on the World Health Organization’s International Classification of Functioning, Disability and Health (ICF), which is a way of thinking about health that applies to everyone, not just those with disabilities. The ICF framework is a diagram that shows how body structure and function, activity, participation, environmental factors and personal factors are interrelated and influence a person's health. No one factor is more important than another. Peter and Dr. Jan Willem Gorter took these concepts and translated them into the simpler, family-friendly F-words, which they argue are also connected. These words convey what’s important to children with disabilities and their families in a way that I could relate to. For example, if a family is having emotional or financial problems, this can impact on a child’s ability to function and have fun. If a child isn’t able to get a key piece of technology, it has ripple effects on what a child can do. And sometimes fun is just as important a reason for doing things as function. It was this description in Peter's paper about the word function that gave us confidence to support Alfie’s walking, even if it isn't the most efficient way for him to get around: “We used to believe that from a very young age children's everyday activities… had to be done ‘normally,’” write the authors. “We have likely inhibited children's development by stopping them doing things considered to be outside the normal—literally ‘abnormally.’ One need only think of preventing children with cerebral palsy from pulling to stand and walking in a crouched gait or expecting children to communicate only with spoken language… Performance improves with practice, and hence our primary emphasis in counselling and intervention should be on promoting activity.” And in writing about the importance of fun, the paper says: “…do not worry about expecting children to do things ‘normally.’” It notes that youth with disabilities participate less in sports, hobbies or even hanging out at the mall than their peers. The simple answer is to ask children what they want to do… “It is the doing, rather than the superior level of accomplishment, that is most meaningful to most children,” they write. We had always erred on the side of “if Alfie enjoys it, then why not?” But reading these words in black and white in a research paper made us realize that it might be better for Alfie all round if he does do things—in whatever way he can. I wonder whether professionals consider the effect that function has on having fun and participating and making friends? Or the way having fun can help build abilities? The F-words, and how they’re interconnected, make sense to me, but I haven't seen the ideas applied by professionals with Alfie as much as I would have liked. In thinking about my role negotiating with service providers, I decided to create an “F-words agreement” that we would share with professionals. This laminated print-out would be Alfie's document: he owned it, and he would show it at clinic visits as a starting point for discussion. To me it represents an informal but serious pact between the child and whoever they rely on for support. I see the F-words as a minimum standard, especially when decisions about services and interventions are made. For example, under Function in Alfie's agreement it says: “I want to do stuff. It may not matter if I don't do it like everyone else.” Under Family it says: “They know me best and I trust them to do what’s best for me. Listen to them. Talk to them. Hear them. Respect them.” And under Future: “Tomorrow is what I make of today. I don’t want opportunities to pass me by. Help me achieve what I can today.” We used the agreement for the first time when Alfie needed surgery to reduce his spasticity. During a pre-op physio assessment, we shared why we thought it was important for Alfie to regain his pre-surgery skills. “But Alfie won't be able to keep up with the other children on the playground if he's walking,” one of the therapists said. I said we thought it was also up to other children to adapt their games to include Alfie. We showed them the agreement, but to our surprise, the therapists didn't respond. There was a loud silence. More recently I wrote to Alfie’s multidisciplinary team to ask for their specific feedback on the agreement, but I haven't heard anything. Being cynical, I wonder if there’s a reluctance to implement these ideas because it would commit service providers and funders to doing more? I hope other parents will create an F-words agreement with their child—one that could evolve with a child's development and interests. My initial idea was that you could issue it to your child like a passport in a plastic wallet or holder or on a keychain. The message behind the F-words is that children with disabilities have a right to a future. The future may be tomorrow, but what determines its quality is what our children do today. Now when we're told something Alfie wants to do “isn't functional,” I'm confident in my reasons for saying “Sod functional, it's fun!” And I have the evidence in the ICF to back it up. Diane Kay lives with her husband and two boys in North West England. She’s a volunteer for a charity that provides advice on special education and disability discrimination. Diane co-presented a workshop called “The F-words in childhood disability: Why is it so hard to do in the real world?” in Pisa, Italy. Her son Alfie goes to the same mainstream school as his brother Laurie, 5, with one-to one support. In addition to walking, Alfie loves swimming, music and going up and down in elevators. Watch a video of Peter explaining the F-word concepts.
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