The First - It's Like A Holiday Around Here

It's almost the 1st. Almost time to flip our calendars. In our house, it's celebrated like a major holiday.

A few days before the first, any first, Beth begins to remind us, "Omos time to flip our calendar!" She knows that she gets paid the first of each month. Her money, SSI is deposited directly into her account so she doesn't see it. But she knows it's there! :)

She gets about $600 a month from SSI. (Supplemental Security Income) Each month we have to report her income (Chuck does this) so they can adjust her payments. Did you know she's not allowed to have more than $2000 in the bank? If she does, she looses her SSI payments. I don't know if that's state or federal law, (it's federal) but it doesn't make sense to me. I can understand $30,000 or some huge amount, but $2000? It just seems like a small number. How does she save up for anything? Vacations? Large ticket items like a refrigerator or a TV?

Anyway, Beth does pay rent. We started having her pay rent a few years ago. It's only about $300 a month, but it helps with water, food, electricity, etc.

She used to have a lot more spending money but now that she's not working, we give her $20 each Saturday for breakfast at church on Sundays and bowling on Tuesdays, then the rest she can spend however she wants. Occasionally she'll have enough money left over at the end of the month to take us all bowling or to the movies or wherever. She loves that! We do too, actually. :)

Flipping our calendars also means clipping toe nails, changing her bed. (I know some of you might be grossed out thinking she only changes it once a month, but life gets SO busy and flipping our calendars is just a good marker for us.)

I also try to sit down with Beth and we go over the coming months activies. Birthdays, holidays, vacations, etc. Just so she's not totally surprised by anything. Of course it's also a great opportunity to work on handwriting, speech... do we ever stop parenting?! :)

SIS Assessment

When your child turns 21 in Washington State, they are no longer tracked by the local school system. They officially leave school and the classroom. Your childs life graduates from para-educators and therapists to job coaches and case workers. In school you have the IEP. The Individual Education Program. It monitors your childs academic progress and offers goals for the following year.

After graduation, your child becomes eligible to receive state funding or SSI. The state needs a process to insure your child really is disabled and entitled to this money. The SIS - Supports Intensity Scale - was published in 2004 but I don't know when DDD began using it. It is conducted every couple of years and measures your childs need for support in various areas of their life. It covers home life, community living, protection, health care and employment just to name a few. It measures the type of support, the frequency of support and how much time is devoted each day for support.

For instance, health care. Is Elizabeth able to call the doctor and order a perscription refill? 1. Does she need only Monitoring? Verbal prompting? Partial or Full Assistance?
2. Is this support needed at least once a month? Once a week but not once a day?
3. Do we support her in this less than 30 minutes a day? Two to 4 hours a day?

Beth had her assessment on Thursday. It is very detailed and takes almost two hours to complete. The case worker comes to your home, pulls out his or her laptop and the process begins. We have been very blessed with Beth's case workers. Both have been very friendly, patient and understanding of all my questions.

I've been told this assessment is conducted every three years, but this was our second or third year in a row. Not sure why. We agreed that with adults with Down Syndrome, the assessment results won't change dramatically from year to year. Beth's mental abilities, at 25 are not going to change so neither will the type of support she needs. Beth's case worker is now organizing the information and will type up the report. We should receive it in a few weeks.

I'm thankful there are people out there, working to create a process that includes me in the decision making about the type of support my child needs. Now if I can just get them to come clean her room.....