Wednesday, April 30, 2014

Good News for Families Waiting for Services

Thanks to action by our state legislature this past session, 4,000—5,000 individuals and families on DDA’s No Paid Services (NPS) caseload will begin to get services by 2017.

The increase in services comes from two major program shifts to take place over the next two years:

1. Moving the state-funded Individual and Families Services program to a federal Medicaid Home & Community-Based Services (HCBS) waiver program. This move allows the state to capture a 50% match in federal funds, increasing the overall dollar amount available to serve more people.

2. Giving the state the authority to develop the Community First Choice Option (CFCO), which is a Medicaid option that draws a higher federal match. Some people refer to it as “refinancing” Medicaid Personal Care. Again, the increased federal match increases funding to serve more people.

Next Steps

A workgroup is meeting to prepare for these new program changes, including any impact to the existing service system. If you are on the No Paid Services caseload, it is important that you position yourself to take advantage of future program enrollment openings.

As we learn more, we’ll keep you posted on what’s happening and what you can do to help ensure that your child receives the services s/he needs.

In the meantime, check out the Informing Families, Building Trust video series on DDA services to become familiar with the current wavier services and community-based programs.

Monday, April 21, 2014

Local Leadership Project Making Waves

"Going into the program I was very apprehensive and didn’t have the confidence that my voice would be heard. Kelly Church and Shayne Nagel, along with the rest of the amazing staff at the ARC, put my mind at ease immediately and I knew that I was meant to be in this program. And now I know my voice will be heard."
—Diane Perry, Local Leadership Project Participant

Diane Perry testifies in support of SB 6387 to benefit families without services

The Washington State Developmental Disabilities Council's Local Leadership Project has been educating and mentoring parent leaders since 2000, but sometimes it takes a little bit of news, like this HearaldNet Guest Commentary, to really drive home the point that empowered parents make a big difference.

Read on to learn how one parent stepped up to help advocate for thousands of families on the DDA No Paid Services Caseload.

Friday, April 4, 2014

Spring Concert by Rachel Nemhauser

My socks are starting to dry out, the mud puddle in my driveway is shrinking, and my husband has started to sneeze.  It is finally Springtime in Washington, and that can only mean one thing: School Concert Season!

I know you know what I'm talking about.  The time of year when all the 3rd and 4th graders come together one evening and perform a variety of musical numbers for all their parents and loved ones. It is a fun evening of performance, friendship, community, and beautiful music.

Attending the yearly school concert can be hard for me for a few reasons, but mostly because I never know what Nate will do while on a stage in front of 200 people.  Will he make a scene? Will he pull his pants down?  Will he announce from the stage that he's ready to go home? Will he walk right off the stage and disappear into the crowd? Any of those things are possible, along with an infinite number of possibilities I've yet to envision. I've lived in fear of the moment I might have to run from the audience onto the risers to stop him from doing something silly or inappropriate. Please don't make me have to wrestle my son, pants-less and screeching, off the elementary school stage!

Thanks to an amazingly supportive and forward thinking school team (Spiritridge, I'm talking to you), this year Nate had a para-educator assigned to stay with him during the performance.  This meant that for the first time I was able to sit in the audience and enjoy the show, knowing he would be supervised and attended to the entire time.

video
As you can see, Nate had a whole lot of fun.  He loved being in front of the audience, and he loved standing shoulder to shoulder with his classmates. He loved getting some laughs and he loved wearing his dressy shirt.  Clearly, the kid is thrilled. I watched his performance while trying not to laugh out loud, or to notice the parents in the audience that were looking at me. I was kind of thrilled too.

As those who know and love him have pointed out, Nate's performance exudes joy.  He's not making trouble, he's only being minimally disruptive, and he's happy as can be. Nate's being Nate, even when in front of 200 people, and I am so incredibly proud.

Share your Spring Concert experiences!

Frustration by Sue Searles

Frustration is the word that keeps coming to my mind today, as Luke is still dealing with high fevers and not seeming to get better...

Fevers   Luke's fevers are almost constantly above 102 and often above 103, we continue to give him Ibuprofen and Tylenol around the clock, nothing seems to help. I keep hoping we are not doing damage to his kidneys.

Respiratory problems continue, he is on at least 3 to 5 liters of oxygen all the time, still needing to be suctioned and coughed often.

Unsure if we are still just dealing with the FLU or if he's contracted a secondary infection as his white blood count was double on Tuesday what it had been on Sunday when he left the hospital.

Sleep deprived   That is exactly what Luke is as he has not been sleeping good since they took him off the ventilator, sometimes he goes 30 hours before sleeping, Gordy and I are also very sleep deprived too as we have been having to keep his meds and suctioning going around the clock.

Totally not sure if we made the right decision to bring him home on Sunday from the Hospital. It seemed like the right thing to do that day since his fever had come down that one day.

Really high heart rate   Luke's heart rate has continued to stay high, which we are sure is a result of his fevers and pain, though we're not sure where the pain is coming from, which is so hard!

Action vs. non action   Do I keep pushing doctors and the hospital to do something or do we just have to wait out the flu, which I've heard can last at least two weeks?

Trying to be patient today as I've waiting all day long for a call back from his Dr.'s office to see what we should do, if anything new.

Increased muscle spasms and constant jerking, Luke looks like he's in constant pain and discomfort which is so hard to see.

Ongoing   This sickness seems like it's never going to end.



Not wanting  to give up on God, though can I be honest to say at times I wonder if He's really hearing our prayers. I know that's crazy and NOT true but I'm just keeping it real. I'm so thankful that when we are wavering in our faith we have so many people that stay strong to carry us along.

Read more about Sue and her family at http://howsluke.blogspot.com/.