Choices...our change for the better

One thing I worked on this year was examination of my kids services and how I could better improve the quality, time and management of those services. Over the years I've noticed that PCA (personal care attendants) and respite providers come and go at times. Having kids with Autism has taught me that when staffing says they are 'moving on'....its time to prepare for another HUGE transition. The unfortunate part is...we have no choice in when that transition happens. Sometimes we got less than one days notice...and poof...they were gone. Agencies would scramble to 'find' another staff that would fit and often months went by with no staffing support. Working in the nursing field myself I completely understood burnout and the high turnover. Nonetheless, when it comes to living with the consequences 24/7...it puts a whole new light on the matter.
My son's have been on the CADI waiver since early 2001. Services are based upon the assessments done by the county and decisions are made by the county as to how much, when, and where. Many, many cookie cutter programs out there....I've tasted most of them. Also, to get any sort of 'equipment' for sensory or home based use was an act of God. Even after 'recommendations' from said people my kids got very little. Too many hands in the till, IMHO.

So...this year I seriously considered their needs and where they were in life as far as what services they depend on to get through their day. Looking at the program options available...I stumbled upon the CDCS option. CDCS (Consumer Directed Community Supports service) is a waivered program which allows consumer choices to how those supports are delivered and by whom. In Minnesota, they are available to people on Medical Assistance waivered programs and Alternative care programs (maybe not in all counties...I'm not sure). But it WAS available for us.

Advantages of CDCS? First starts....you choose and design the services and supports that BEST fits your assessed needs (yes...you still need the assessments done by the county). The consumer (wow..novel idea) decides when you should receive those supports and services and WHO you hire to provide them. This can include spouses and parents. You do the hiring and firing! YOU decide how much to pay them. The county and state still monitor to ensure the health, safety and well being and to ensure that everyone is in compliance with state and federal regulations. Worth mentioning too....you can stop using the CDCS at any time and return to other waivered services.

So in a nut shell...this was a new and better option for my guys. I knew that alot of what my staffing issues were..lack of pay and flexibility in their schedules (beings they had several clients through and agency that they had to service). Before I chose this new road....I DID check with the staff that I wanted to see if they would be willing to make the change with us. The ones that stayed....are invaluable and agreed wholeheartedly.

Downsides..there is alot of paperwork and direct supervision on my part. But hey...at what point having a special needs child do we NOT have paperwork? And don't we WANT to have that ability to supervise what staffing is doing with our kids? Of course! I just penciled in a certain day each week for paperwork and budget review (can be done on a monthly basis). For me, the option of being able to personally train, supervise and change a care plan at ANY point is beyond words. My kids are constantly changing in their needs...from day to day...to transitioning back to school....to sudden lapses in skills (regressions) etc. The flexibility benefits my children and its easier on me then having to make phone calls and try and schedule in several meetings to make a simple change in service plan.

So far...things have gone quite well and we're all adapting to having the FREEDOM that this plan has to offer. My kids staff...just plan HAPPY now to come to work. Go figure! :)

This past summer a lot of cuts were made to PCA hours and monies in general to the county. If anything came of this...I've learned that if you are going to cut me off at the knees....I'm going to have some kind of say in where's its going to get spent. After all....to me its simply the same that I would do for any 'normal' child. We make decisions and choices in our lives....my kids need ME to advocate for what's best for them.

It's all about choice...I'm glad I have that option now.