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Read this report of inspiring stories from Phase One of the Be Our Voice project.






Why I Participate

By Parent Partner Olga Cappas

August 15, 2013

In NICHQ’s work on improving medical homes, healthcare professionals work closely with parents to make improvements to pediatric systems. Olga Cappas shares her story of raising a son with disabilities and why the streamlined care offered in a medical home is so important.

Read the original transcript in Spanish here. (Lea la transcripción original en español aquí.)

Cappas’ son, Ángel Gabriel Lugo Cappas
Olga Cappas’ son, Ángel Gabriel Lugo Cappas

Olga Cappas knew something was wrong when she was pregnant with her son 12 years ago. He wasn’t moving like normal, and she was suffering from leg pains. After a sonogram revealed that the fetal heart rate was rapidly decreasing, her doctor recommended inducing labor.

Cappas’ son, Ángel Gabriel Lugo Cappas, is now 12 years old and has cerebral palsy, hemiparesis (a weakness on one side of the body), microcephaly (a neurological disorder) and epilepsy.  According to Cappas, he loves video games, the computer, reading, drawing, and walking in the park, among other things. While fighting for care for her son, Cappas became a Patient Navigator (someone who assists other patients) for the Caring Health Center in Massachusetts and a parent partner in the CHIPRA Massachusetts Medical Home Initiative. Below is a translation of Cappas’ experience and what inspires her to advocacy.

Tell us about your son, Ángel.

Ángel has developmental delays. He has to rest often at school to be able to maintain focus on his tasks, and he needs extra time on written and verbal tests. He has to be escorted from place to place, assisted with going up and down stairs for his safety and supervised with his personal hygiene. He takes medication daily to avoid epileptic seizures and has to wear a helmet to protect his head when he is having seizures more frequently. For many years he wore braces on both legs to be able to walk, but he does not use them now thanks to the treatment he received.

Describe your experience raising a child with special needs.

Even though my experience has presented me with difficulties and setbacks, it is the most marvelous experience in my life. I do not feel that I have a “special” son but rather that I am a special mother since I have the opportunity to raise and love my son and appreciate how wonderful my beloved Ángel is. Also, I have had the chance to educate myself to help the other children with special needs and their families.

Was it difficult to obtain medical assistance?

Yes, it was very difficult. I did not have transportation, nor did I know how to speak or write in English. Most of the doctors would ask me to bring someone with me who spoke English, but this was often impossible. I would sit and wait for someone to call me so my Ángel could see the doctor. I would knock on people’s doors and they would close them in my face. However, I never lost the desire to fight for my son.

What barriers did you face in getting treatment for your son?

At the beginning he was doing very badly, and I never understood why my son, who looked normal, was not so normal. Everything was confusing for me. I was very ignorant and did not understand diagnoses or treatments, nor did I know anything about clinical terminology. I didn’t know that specialists existed for each health condition. I just knew that my son was getting sick and I had to take him to the doctor. I moved to Springfield, Mass., searching for help for my son and there I encountered the language barrier. I didn’t know any English. I will never forget the day that my son was maltreated at elementary school. I complained to the staff and no one took my complaints seriously because I didn’t know the laws or speak the language. I just switched from one school to another until they acknowledged me, and I demanded that they respect my son’s rights. I was doing volunteer work at the Talleres Julia de Burgos program at Caring Health Center at the time. I asked for help from my co-workers, and they provided me with help and education immediately.

Why did you start working at Caring Health Center?

I started working as a volunteer to fulfill the hours required for me to receive economic help and food for my family. I worked at Caring Health as a volunteer for about 4 years, working about 30-40 hours per week. During this time, my supervisors helped and educated me. They sent me to various trainings, permitted me to study and instructed me to buy an English language program. In the end, they built the professional that I am today. One day a new supervisor arrived, Jacqueline Johnson, who believed in my abilities. She evaluated me and gave me the opportunity to be part of her work team in the health center. They hired me as a Patient Navigator, someone who assists patients who are having trouble obtaining services or treatments in the healthcare process. I have been in this position for several years and am very proud of my work team and my work, as I am able to help many patients.

Aside from assisting patients, what work do you do at Caring Health?

It’s very important to me to involve myself in everything that could benefit children with special needs and to help them be safe and trust in themselves. I also have the opportunity to learn and familiarize myself with procedures, laws and treatments for children with special healthcare needs. I can listen and exchange opinions with other healthcare professionals. Finally, I continue preparing to be a special mom.

Describe your experience of working on NICHQ’s CHIPRA Massachusetts Medical Home project. Have you seen any improvements in Caring Center becoming more of a medical home?

The Caring Health Center team at a NICHQ learning session
The Caring Health Center team at a NICHQ learning session.

There have definitely been many changes made in the building. For example, the team has painted, restored the rooms and halls, and replaced the chairs in the waiting room. There have also been some changes with respect to the staff to improve service. For example, all of the front desk staff members have uniforms and IDs, and there are more bilingual employees. In the health center a bulletin board informs families and patients about different services, and educational materials are posted in the hallway that leads to the pediatric area. The team implemented the use of a care plan for children that need it and participants continue making changes to improve the center and its services.

Why is a medical home important?

A medical home, where multidisciplinary care is focused on the patient and family, is very important because it provides you with confidence and safety. You learn, and medical staff explains to you adequately and clearly, all of the treatments and procedures that are used.

What would you say to other parents who want to improve healthcare for their children?

The key is to ask. Never be satisfied with doubts or confusion. Check different treatment options and always listen to a second opinion from other healthcare professionals when you’re dealing with procedures that could put your child’s life at risk.
 
Look for a nearby medical home. It is the best and safest option to obtain adequate medical assistance. There you will find healthcare professionals who help you with the medical treatments your child needs and also will help you to understand your child’s diagnosis and explain it to you and educate you in a clear, concise and comprehensible way. There you will have the right to be heard. You can express your opinion, and they will respect it. Finally, the best advice is never to let anything stop you and to keep fighting for the best quality of life for children with special needs.


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