Right of the Month- June

To withhold family information from your records or discussions with service providers.

I've heard from many families in service that between intakes, evaluations, doctors, and therapists, they feel like they recite their family and child's history...several times over. As a therapist, I can say that the more I know about your family and child, the better I can assist you. However, this has to be balanced against the family's need for (and right to) privacy. Ultimately, the line is drawn differently for each family, and with each professional, and I would love to hear about how any readers have decided to draw those lines.

For other discussions of rights, click the right of the month label.

Right of the Month- May

To be informed about the types of records and information which are kept on your child and family, and the steps you can take to review and request changes to those records.

The agency I work for, and most other agencies that I know of, keep a file for each child/family in service. Our files include things like current IFSP's, evaluations, therapy reports, things signed at intake, and logs from each visit. Since the files are about your child, as the parent you have the right to ask to see the file. We prefer to make an appointment so that someone can sit down and go through the file with you, but there isn't anything in the file that you wouldn't be allowed to see. I believe the procedures with the DDD might be a bit different and a bit more formalized, but I searched briefly on their site and didn't find any info. If you are requesting a copy of your child's DDD file for some reason, calling your support coordinator would be a good first step.

Right of the Month- April

Sorry this is so late...I've been swamped both with work and with issues on the home front.
The right of the month for April is...

To have your family's names, social security numbers, and all other personally identifiable information treated as confidential.

This means exactly what it sounds like it means. The DDD, doctors, and any therapists who work with your child consider personally identifiable information to be confidential. That includes names, birth dates, social security numbers, etc.
To see other Right of the Month posts, click on the tag at the bottom of this post.

Right of the Month- March

YOU have the right to receive a full explanation of evaluations, assessments, supports, and services being offered, and/or any changes planned for your child, in your language or in your mode of communication, unless it is clearly not possible to give you the explanation in your language, before you give consent.

There are lots of listed commas in this sentence, but its pretty straightforward. Essentially, you have the right to have everything explained until you understand and before you are asked to consent. This also puts some of the responsibility back on the parent. If you don't understand the results of an evaluation, ASK before you consent. If you don't understand why services for your child are being changed, ASK before you consent. If English is not your preferred method of communication, you have the right to have a translator present. It can be one of your choosing or not, but you have to ASK. You are the parent (or guardian). Think of a doctor- you wouldn't consent to a test, medication, or hospital stay that you didn't understand. Its the same with services.

As a reminder, the full procedural safeguards are located here.

Right of the Month- Intro

All of this activity with the DDD/DES has made me re-realize how critical it is for parents and families to KNOW THEIR RIGHTS. As recent events have shown, families cannot depend on anyone else to look out for their interests. Politicians, support coordinators, and even providers may (or may not) mean well and try their best, but they have their own agendas, caseloads, and lives to look after. Ultimately, the only one who can ensure that you (as a recipient of services) and your child receive everything that you are legally entitled to is YOU.
When a family begins services with the DDD/DES, the support coordinator typically hands over a booklet and says, "here is a list of your rights and procedural safeguards. Please sign here to verify that you have been informed of your rights." Don't get me wrong- this isn't a hit against support coordinators. I've worked with lots of support coordinators and most of them go above and beyond to make sure that families are getting the best services possible. Like everyone else they are often overworked and underpaid, and explanations of rights can get tricky in any circumstance. Besides that, a lengthy discussion about legalities often isn't what the family is interested in right then. The expectation is that parents and guardians will read through the procedural safeguards booklet on their own time, but I'm sure we all know how likely that is. Most people don't think about that little booklet again until something bad happens.
So, because it is important for families to know what rights they have, the company I work for does something called a Right of the Month. Each month, we choose one right from the procedural safeguards booklet, print it out, and discuss it during home visits that month. Its not usually a lengthy discussion, but since there are 13 basic rights, in just over a year of service we cover all of them.
Basically, I'm thinking I could do the same thing here, and spotlight a right each month, along with a brief discussion. I'm looking to make this blog useful for parents navigating the birth-3 system in Arizona, in addition to keeping up to date with legislative happenings. Towards that end, if there is something related to Early Intervention that you would like me to blog about, feel free to comment or drop me an e-mail. I'm not a lawyer, so I probably couldn't help with those sorts of questions, but I'm open to trying to answer questions within my realm of knowledge.

For reference, the full procedural safeguards are listed here.