Tuesday, July 22, 2008

The Best Care

In just a few weeks, our statewide family support group, of which I am the president, will be holding its annual family retreat. This year we will be at the beach, and that always brings about double the attendees as usual. Our support group, which is funded completely by grants, is able to pay the full cost of the retreat, including hotel rooms and all meals for the families. In addition, we provide childcare services for the families while the parents are attending educational seminars.

The children for whom we provide childcare have significant disabilities. In addition to having deafblindness, most have other physical or intellectual disabilities. This year we have a lot of babies and young children signed up for childcare. Our wonderful childcare supervisor spends the 6 months before the retreat recruiting and training childcare workers as well as planning activities, room layouts, crafts, and an overall theme. It’s a huge job and our organization is very blessed to have someone so talented and committed, because the pay is minimal!

So where is all this leading? I would like your opinions. If you, as a parent of a child with significant disabilities, were to leave your child in the care of someone else – and that someone else was essentially a stranger to you – what would be your concerns? What questions would you have? What answers would you be expecting to make you feel comfortable leaving your child? What qualifications would you expect the childcare workers to have? What would be your top three most important things to you? Would YOU be comfortable leaving your child?


Anonymous said...

I'm not a parent. And I'm not a Mom. But speaking as a deaf adult who was once a little deaf girl, one of my concerns would be:

1. How many of the staff are fluent in sign language (for me, if a person doesn't sign, it is much harder for me to understand them, ESPECIALLY in a group situation because it is pretty much impossible to lipread a person once they start talking to other people and not just to me; a fully signing environment is more comfortable than a spoken environment that is merely sign interpreted, and a sign interpreted environment is much more comfortable and safe than an environment in which no one signs)

2. Regardless of their *mode* of communication -- to what degree are the staff deeply and sincerely committed to creating a fully accessible communication environment for the child? Do they understand how upsetting and traumatizing it can be to be swirled by action, and be told "go here, stay there, come now" without ever understanding any of the "whys" or having any inkling what activities one can anticipate within the next five minutes, never mind what to anticipate for the rest of the day or the rest of the week? Do they strive to check in with each child to ensure they understand as much as feasible of what is going on, to the limits of their capacity (in terms of age, language skills, cognitive abilities, etc.), and WHY it is going on, and what is going to happen next? Are they deeply committed to always finding creative ways to get their information across if their first one, two, three, five, ten attempts don't seem to work?

#2 is important because there are people who sign but who rarely actually USE what they know when it could help the most. They find it hard to sign, and look for any excuse not to. So sometimes attitude is more important than signing skills: I'd rather be with a person who can't sign but is thoroughly committed to full communication access (and SHOWS it in action) than with a person who signs but is actively hostile to ensuring my inclusion in all interactions and accuses me of being the problem when I protest my treatment.

However, #1 is NOT a full replacement for #2, and #2 is NOT a full replacement for #1. The ideal is to have both in conjunction.

Ashley's Mom said...

Anonymous, we have a unique group of childcare workers, many of whom join us each year for the retreats. We also recruit new folks each year so we can have a cadre of skilled workers.

Because all of our children are deafblind, the workers act as 'interveners' for the children. In other words, besides facilitating communication in whatever mode is chosen by the child and/or family, our workers are trained to be more than just interpreters. They help the children access their environment. They facilitate peer interaction. They describe the room layout, the people and things in the room, etc. etc.

Since our group is composed of parents of children who are both deaf (or hearing impaired) and blind (or visually impaired), communication is of the utmost importance to us. We have workers who are skilled in several versions of sign language, in total communication, in the use of augmentive communication devices, picture symbols, etc. And since our families fill out child care information forms well before the retreat, if we are lacking in one form of communication, we focus our recruitment efforts there.

However, I do like your comment about anticipating activities as well as what is scheduled for the whole day, week, etc. We all use calendar systems of some sort for our children at home. I think we need to explore their use in this setting also.

Thank you so much for all your thoughtful comments!

Ashley's mom

Penny L. Richards said...

Well, this seems small, but nametags on the careworkers helps ME remember who I talked to, and helps me find them again the next day when they're wearing something different or have a hat on or whatever (faces are hard to place when you're at a conference and seeing a lot of new faces all at once).

And I usually put my cell# on my kid's nametag if he's got one, so there's no fumbling for his paperwork or a sign-in sheet in an emergency. Not that it's happened (yet), but it's one more measure for fast notification in the event of any need. Easier for everyone, I figure.

The plan sounds really wonderful--you are indeed blessed to have such a great childcare supervisor on board!

Ashley's Mom said...

Thanks, Penny! BTW, your interview goes up on 5mfsn this Sunday morning at 9am.

Anonymous said...

How wonderful that you are leading such a great group. It sounds like a whole lot of work.

I have a real problem leaving M with people I don't know and have never had the courage to do a camp. I think someone could tell me all kinds of great things and I would still not do it. I really think a parent has to be ready for leaving their child in a camp situation. You have so much experience and that would mean a whole lot to me.