I am often told how good of an advocate I am for my children. I spend hours on the phone finding the best possible care and best doctors. I do not give up until I have the best care for Sawyer. I know this is true and it is in my nature.
I am also an English-speaking white person. I have experienced no racism and I have no language barrier that is stopping me from connecting to the doctors and case managers.
In my small experience and upon speaking to therapists there tends to be a very big disconnect between families that speak English and those that don’t. I do believe that it is more than a language barrier but a lot of it is the language barrier. If you do not know the right questions to ask you often aren’t offered the services that are available to you. I don’t want to place blame on social workers or case managers. There are many, many out there that are wonderful.
I have personally had some wonderful case managers, but my friend has had opposite experiences.
She is Latino and English is not her first language. She has two daughters with special needs; including feeding tubes, cerebral palsy and had no help. When we first began talking she explained that her husband was working 16 hour days in order to keep up. She was unable to work because there were no daycares that would take two children with special needs and feeding tubes. She also could not hire a nanny because it was too expensive. They were in a very small home that was not adequate, but they could not afford a bigger home. This left her and her husband working around the clock and their family was suffering.
When we began to talk about it, I mentioned that there are county services that would give her the help that she needs. She would be able to get nursing help as well as some income support so her husband would not have to work so much. She said she had heard she may be able to get some help but when she called them, they told her she needed an interpreter. She said they didn’t seem to understand that she could speak English but needed things explained a couple times so she could fully comprehend. She explained they told her an interpreter was hard to get and took a while. She felt defeated and gave up.
This INFURIATED me.
I understand that case workers and county workers are busy. I understand that they have a lot on their plates but why not take the time to explain and empathize instead of brushing off? Why wouldn’t you listen and try to understand? This family was exhausted, stressed and feeling defeated and yet, they couldn’t get help. It was at that point that I reached out to my case worker. She is a wonderful person that truly loves what she does. She works hard to understand and spend time getting to know her families. She was able to give me the exact language and questions for my friend to ask.
Once she had the knowledge in her hands, she was able to facilitate the help and assessments she needed. She now has nursing care, was able to move to a bigger home and her husband is home more to spend time with his girls.
This situation is not outside the norm.
I suspect that this happens quite often and many children with special needs are unable to receive the care they need because of a language barrier or even a racial bias. The reason I am sharing this with all of the wonderful people who are reading this is because I am hoping it create awareness and change. If you know another parent of a child with special needs, reach out, help them, see if they need help navigating this tough and unique world. We are all in this together.