Politics?

I don't like politics. I never have. I don't know the difference between right wing and left wing, nor do I truly understand liberal or conservative. For the most part, they're a bunch of people making bad decisions with my money! If I don't like someone in political office, it's certainly not because of their party alignment. It's probably because I think they are not looking out for the best interests of their constituents.

That being said... let's talk about politicians.

Senator Jill Vogel: At the very beginning of our fight for the child development clinic, I presented her with a petition. She sat me down, listened to everything I had to say and assured me she would help. She gave me her business card and wrote her personal cell phone number on the back. She has been as good as her word! The Senator and her office personnel have been an invaluable resource! Everytime I have called her, she has gotten back to me quickly. She has taken time out of her busy schedule to have long drawn out conversations with me. I am eternally grateful, and she will always have my support.

Candidate Larry Yates: I had the pleasure of meeting this gentleman at one of our CDC meetings with the state health department. He had approached us and wanted to help. He has shown a concern for our disabled community and has made himself accessible for advice and assistance in our fight for the child development clinic. He encouraged me to take the opportunity to speak at a local forum he hosted for the disability community. He seems to be a very down to earth gentleman with genuine care and concern for the community.

Candidate Mark Berg: This gentleman is running against Larry Yates for the 29th District Delegate seat. I have attempted to contact him on several occasions. I took the time to explain our work to keep services local for intellectually and developmentally disabled children and adults. I had invited him to our meetings as well. Mr. Berg sent a response to me which didn't even address my original email. When I posted on his Facebook page about my disappointment, the post was quickly removed. I was soon contacted by one of his handlers who promised me a quick response by the candidate himself. As of yet, I have not heard a thing. Another gentleman posted his concerns as well, only to have that removed. Apparently he doesn't seem to realize that 1 in 50 children have autism... and that child has two parents who most likely vote. One in 25 parents in the 29th district are influenced to vote by his actions. His inactivity is going to cause them to vote for someone else.

I have absolutely no idea what political affiliation these three people have... I don't know if they are Republican, Democrat or Independent.

And I don't care.

The only Tea Party I have ever heard of occurred in Boston a long long time ago.

But I DO know who has shown concern and care for our community. I have seen who is willing to roll up their sleeves and fight for our children. That's what matters. Our children today are the leaders of tomorrow. How we lead them today influences how they lead us in the future!

What kind of leader do you want?

One hand washing the other?

Tonight the Northern Shenandoah Valley Save Our Services coalition met at the former CDC offices to discuss with the State Health Department representatives the ways we can work together to get the funding back to this area for a local Child Development Clinic.

We were very pleased with the turnout on our side of the table. The NSVSOS committee was joined by:

• Concerned Citizens and Parents
• The Winchester CDC Personnel
• Frederick County Department of Social Services
• Frederick County School Board
• Lord Fairfax Health District

We were especially fortunate to have Senator Jill Vogels legislative assistant Tricia Stiles with us as well as Candidate for the 29th District Delegate seat Larry Yates .

Everyone in our group brought up some very good points tonight! Questions were posed to the staff in Richmond, but most (if not all) went unanswered.

1. What is JMUs capacity for seeing and evaluating children at their facility? How many per month are they able to serve?
2. What is the current backlog of appointments?
3. What is the expected wait for children on that backlog?
4. Because of their increased caseload, how has the budget at JMU increased? How much of the money that was originally earmarked for the Winchester CDC did they end up with?
5. Being as JMU has refused the patient files that are housed at the Winchester CDC, what will happen to them? Who will administer these files if there were ever a need for them by the patient/family in question?
6. What do we have to do in order to be involved throughout the year and especially at contract renewal time?
7. What is JMUs transition plan?
8. What is JMU doing to solicit their service to children and providers in this area?
9. How will emergency appointments be handled?

Not one of these questions were answered tonight. Either due to bureaucratic red tape or a lack of preparedness... we were left with questions. Speaking of bureaucratic red tape, a phone call with a request to encourage JMU to communicate had to be run up the chain of command flagpole... at the expense of never calling me back.

As for JMU, our initial attempts to contact the Harrisonburg Clinic were met with less than savory results. I'm not sure why. Thankfully, another representative from JMU contacted NSVSOS Vice Chairman Cassie Phipps Purtlebaugh and extended an olive branch.

I would love to have them drive up from JMU and sit in on all of our future meetings. Its their job, right? They'd surely be paid for it. As a matter of fact, I am publicly requesting their physical presence at the next meetings! I would love to meet them personally and shake their hands! Get to know them, and have them get to know the parents of children affected by the loss of our CDC. I think it would be an eye opening experience for everybody! Of course, if the trip up here is too inconvenient, I'd be happy with a conference call.
Candidate Larry Yates brought up something interesting... The Virginia State Rural Health Plan . This plan, which the State Health Department has a hand in, has recommendations from their "Access Council":

Access to quality, affordable and accessible health care services is essential and should be an expectation of all rural residents. Access must not be limited solely to primary and acute care, but must include a greater integration of mental/behavioral health, EMS, dental/oral health, telehealth, women’s health services, preventive care and health promotion and education.

 Sounds like a great idea to me! Where does the CDC fit in to that plan? That leads me back to the title of this blog. Kinda seems like one hand isn't washing the other, don't ya think?

One last thing. Ever since our first meeting with the State about the CDC, we have been mentioning their budget and how it would be great to see it. I even asked for it in my email response to Cynthia Romero on June 2nd. So... let me make it crystal clear

I WANT TO SEE THE VIRGINIA STATE HEALTH DEPARTMENT BUDGET FOR THE PAST 3 YEARS

Pretty Please
With sugar on top
;-) (winky face)
Thank You.

It's that time again!

Tomorrow, Wednesday July 17th, at 6 pm... members of the special needs community will be putting our heads together to come up with an idea to keep the Child Development Clinic services in the Winchester area.

If you are new to my blog/website/Facebook/G+/Twitter stuff, let me fill you in...

The Virginia Health Department decided to close the Winchester Child Development Clinic (CDC) and transfer all the scheduled patients to Harrisonburg (75 miles away).

The CDC evaluated intellectually and developmentally disabled people in order for them to receive important services to help them become functioning citizens in society. Essential services to enrich their lives.

If you go to www.nsvar.org and click the Social Links / News link, you will see all the news videos about our fight to save the CDC.

We have presented them with a petition which now has over 7000 signatures, the backing of a state Senator and the attention of the Health Department.

Got an idea to help us save the CDC? Contact me! Email me at nsvar.org@gmail.com or call me at 540-692-6136 and I will give you all the details!

I really hope to see you there!

An open invitation

Wednesday, July 17th at 6pm, we will be gathering in Winchester, Virginia to come up with several ideas on how to keep the Child Development Clinic services local.

If you have ANY ideas on the subject, I encourage you to join us! We will have several members of local community services, the school system, local politicians, the local news media, passionate advocates and concerned parents.

EVERY VOICE IS EQUALLY IMPORTANT!

Please stand with me, with the children of our community who need this essential service, with the families that love them and want to give them every opportunity in life... Stand up for what is right!

If you are interested in attending, you can contact me at nsvar.org@gmail.com , 540-692-6136 , or by using the contact form on www.nsvar.org and I will give you all the pertinent details!

If you are unable to attend but have an idea or suggestion, please email it to me and I promise you it will be read at the meeting!

I hope to see you there!

Not half full, not half empty. Just half...

Tonight we met again at the Winchester Child Development Clinic to find a way to keep the services they provide local. We were joined by video conference by the State Health Commissioner Dr Cynthia Romero and her staff. I am honored that Dr. Romero and staff took the time after office hours to meet with us. I'm glad they recognize that this is an important issue and deserves their direct attention. Doctor Charles Devine was our host.

I was joined by the Honorable State Senator Jill Vogel (by phone), Susan Groom from the Winchester School System, concerned Autism Advocate Cass Purtlebaugh and the staff of what was the Winchester Child Development Clinic.

First off, I want to thank a few people. Senator Vogel has been a staunch supporter of our cause and I am so very pleased that she is fighting along side of us! She was absolutely awesome tonight! Susan Groom brought up some very good points at the meeting and it is obvious that she has the best interests of our area children at heart. The City of Winchester is VERY lucky to have her. As for the staff of the CDC... they are the reason we are all together in the first place! Its their tireless devotion to special needs individuals in our area that brought us to this point!

But, the meeting left me with more questions than answers...

1. The budget was asked for and mentioned several times by our group, but no one on the other side of our virtual table said ANYTHING when it was brought up. Where were the cuts made? How much money was allocated to JMU to hire more employees in order to take on an increased case load? We need to see the budget. Why cant those monies stay in our area?
2. Being that they now (obviously) have more money to hire and evaluate, whats their quota for seeing children from our area? The local CDC had been fully evaluating at least 150 children per year, not to mention all the other services they had been undertaking. Is the JMU facility going to keep up that pace? You will find the answer to that later on in this blog. Prepare yourself, its disappointing.
3. The state used to have satellite offices for each of their CDCs. The Winchester CDC had offices in Leesburg and Warrenton. Why couldn't the JMU facility open up a satellite office in our area utilizing space provided by one of our many generous non-profit organizations (and the money I mentioned above)? 
4. If the state is serious in their intent to help us keep services in our area, how long is it going to take? What can they guarantee us? What tangible help will they provide? (The money which was formerly allocated to the Winchester CDC would be a GREAT start). How much weight will they carry?

That's the most important questions so far. Now for the disappointing part I mentioned earlier...

The JMU facility has 7 children from our area scheduled for evaluations for the month of July. Our local CDC, prior to being closed, had 14 children scheduled for evaluations. Thats 50% less. HALF. Wheres the efficiency? What happened to "seeing more children"? This looks like seeing LESS. That's 7 children this month who wont be able to benefit from Behavioral Therapy, OT, Psychological Therapy, Environmental Modifications, Skilled Nursing Services, Assistive Technology, etc. 7 kids who will suffer needlessly in school because the groundwork won't be laid for them to have the tools they need to succeed.

How long will our area have to wait before local services are returned? How many children wont be seen? 14? 28? 56? When did that become acceptable? Remember the autistic children who eloped and were found dead? Environmental Modification can help to prevent instances like that. 50% fewer children will have that safeguard. Unacceptable.

Theres no favorable way to see that number. That glass IS NOT half full. It's up to all of us, advocates and State Health Department, to fill that glass back to the top.

Our next meeting with the state will have many more people "In the Know" involved. I will also be asking the news media to join us.

Get involved. You owe it to your children.

Tomorrow ...

It's time to meet again with the Virginia Department of Health. We have been tasked with finding a feasible way to keep services in our area. The center is closing, that much is certain. But they have extended the closure by one month to help the families that narrowly missed the deadline.

I'm thankful for that, but it's merely a band-aid on a gaping wound. We need to find space and money for these amazing individuals to do their great work helping Intellectually and Developmentally Disabled children and adults in our area.

Get ready, Commissioner Romero! We are not going to give up until we get what our families need! I'm bringing friends in high places!

Pack a lunch and bring backup. You're gonna need both...

Just to catch you up on NSVAR News...

I know its been a while since I have posted a blog. Nothing has really happened since my meeting with Dr. Devine and Sidnee' Dallas from the Department of Health. I'm going to start pushing the issue again this week.

I'll tell you what has frustrated me, though... I had contacted all the local news agencies at the beginning of this fight and the response was mixed. Hattie Cheek at TV3 Winchester, Hayley Mason at WHAG News and Kim Walter at The Northern Virginia Daily really took interest and have done a wonderful job keeping the issue of the Child Development Clinic in the news. They truly care for the children and families in our area who are impacted by the closing. I also will be working with Dan McDermott at the Frederick County Report. to get our story out to even more people!

The Winchester Star... thats another story. Rebecca Layne had interviewed me at the very beginning and put a small article in the paper. They havent wanted to touch it since. We have made great strides in this fight! A petition with almost 7,000 signatures! The backing of a state senator! I emailed and called to ask why they havent been covering it since... the response I got was basically to call them when something big happens. Really? Closing the CDC is the BIG and BAD thing we are fighting to prevent! I would hope that a community news outlet would take some initiative and work FOR their community!

Its disappointing, to say the least.

On the opposite side of that coin, I have been honored to know and become friends with some amazing people in our community as a result of this struggle as well as strengthen my friendships with others! I think I have become a better person during all this. I've had my head so deep into NSVAR and the CDC that maybe I haven't shown the appropriate amount of appreciation. "Godmother", we truly love ya! You are our family now! Shelley D., we are so proud to know you better and consider you our close friend! Your support and willingness to speak out with me for the CDC has been so wonderful! Sharon H. We are glad to know you, glad to fight alongside you for the CDC and I'm especially glad to know that your little guy got what he needed! I look forward to our growing friendship! Senator Vogel, I hope I'm not overstepping my bounds by calling you a friend... but your support has been invaluable! It gives weight and credibility to what we are fighting for. I value and appreciate you! (Almost called you just "Jill" on the phone last time... no disrespect intended madam Senator!)

Oh! Hey! We have had some car decals made with the NSVAR logo! Want to help spread the word?

My van rocking the NSVAR goodness!

Pretty cool, huh? They were made by Alyson at http://www.ososplendid.com/ and they are beautiful! (Check her site out... A lot of really cool and creative gift ideas to be found there!)
They are $7.00 each. That covers my cost to have them made, and whatever postage I need to send them out. I can mail them anywhere in the US. You can reach me at nsvar.org@gmail.com , www.nsvar.org , www.facebook.com/nsvar or www.twitter.com/nsvar if you are interested in getting one.

Things are looking up!

Remember MY LAST POST ??? Well... Doctor Charles Devine, Director of the Lord Fairfax Health District, called me today and I am meeting him tomorrow afternoon!!!!

From what I gather by the letter in my previous blog and what he said to me, I am being directly involved in the decision making process!

I have some ideas... And I plan to do all I can to keep the CDC services local. This will involve me, people in our area who are willing to participate in the "Brainstorm" and people from the Department of Health in Richmond.

I asked in my last blog and I am asking you now more than ever... Please give me any and all ideas you may have about how we can keep the CDC in our area!!! No idea is too far fetched!

PLEASE HELP ME HELP THE CHILDREN IN OUR AREA WHO NEED THE CDC!!!

I can be reached at:

www.nsvar.org

www.facebook.com/nsvar

www.twitter.com/nsvar

or here... just leave a comment at the bottom of this blog post!

Help... and a lack thereof

I've been plugging away at this fight for the CDC. I've spoken to Senator Jill Vogel on several occasions about it and I've also been in contact with Hattie Cheek from TV3 Winchester.

I sometimes wonder what I should be doing now... I emailed the VDH Commissioner, as well as the director of Family Health Services. Twice. They haven't responded to me yet. I'm working on that one...(wink wink)

I received a short letter from Representative Frank Wolf. Click it to view a larger image

 

No help. Kinda disappointing, isn't it?

Well... I did kinda get lucky last friday. I called the office of Family Health Services and fully expected to get Dr. Laurie Kalanges assistant or secretary. A man answered and I asked to speak to Dr. Kalanges. He told me that he did not know how to transfer calls, so he gave me the number to her desk!

Here it is:

Dr. Laurie Kalanges

Director of Family Health Services

Virginia Department of Health

(804) 864-7170

Call early, call often!

I REALLY NEED YOUR HELP. I can only do so much by myself. I am begging you to pick up the phone and tell Dr. Kalanges how important the CDC is to you, your children, your friends children and the community!

I see why the budget cuts were made!

READ THIS ARTICLE

Look 16 lines down in the article...

Cynthia Romero, Commissioner of the Virginia Department of Health is making...

$181,500.00 a year!!!

No wonder they needed to make budget cuts!!!

Ladies and gentlemen, your children will need to suffer so this state employee can buy another Mercedes!

Wow...

Just wow.

Last Fridays WHAG News spot

For some reason, WHAG did not post the video from the news story... Here's the transcript of the story:

BOYCE, VA - Jack Starry and his wife Mary work around the clock to care for their son JT, who has autism. He works just as hard in his fight to keep the state from closing the Winchester Child Development Clinic for good. 

"Why was there no other fat in their budget and they decided to go for the Child Development Clinic," Starry questions.

Starry's petition against the closing has gained more than 6,800 signatures. The Virginia Department of Health has responded and they are standing behind their decision.

"This statement here does not address any of the concerns that we put forth on the petition," Starry says of the VDH's response.

In a statement to WHAG, Dr. Lauri Kalanges, the director of family health services for the Virginia Department of Health says that tight funding contributed to the decision to close the Winchester office. She says the VDH found that contractors were able to see more children than local CDC's partly because they have more "flexibility in staffing and in tailoring the evaluation to the specific needs of each child." After evaluating different models she says the VDH "determined that the program goals of serving as many children as possible and identifying children with developmental delays as young as possible would be best served by transitioning to a contractor-based model."  

"I'm going to be contacting her directly, Dr. Lauri Kalanges, and figure out what can be done," Starry says. "How we can change this? I'm going to ask her about the logistics of absorbing so many CDC's to be seen at JMU. How they're going to be able to see more children, taking on so many different case loads from so many different areas? When you take more case loads, you're bogging yourself down. You're not opening yourself to be more productive." 

Starry also has the support of local state Senator Jill Vogel, (R-27th district). She says in a phone interview nothing is more important to her than keeping the local CDC open. 

"For those who would argue that this is a resource matter and moving it geographically, that is not undermining people's access to the services, that couldn't be farther from the truth," Vogel says. "If you make it so that it is not accessible, many many families won't be able to travel." 

Vogel says she plans to fight with Starry to change the decision and keep services local. 

_______________________________________________________________________

If you got the chance to read my last blog, you will see my response to the Department of Health... And I STILL HAVEN'T GOTTEN A RESPONSE!!!

My response to the VDH

In my previous blog post, I uploaded the response I got from the Virginia Department of Health. <--- click to see it.

Below is my response. Along with the addressees mentioned below, it was also sent to 3 different news outlets, Senator Jill Vogel and Delegate Beverly Sherwood.

Tell me what you think in the comments section below this blog post...



Greetings Dr. Kalanges , Mrs. Dallas and Commissioner Romero,

I received the response to the petition with over 5800 signatures at the time of printing (currently over 6800) that was sent to you recently. To be honest, I was disappointed that NONE of the issues mentioned in the petition cover letter were addressed. I was hoping for some clarity on the matter.

1) "In conducting an evaluation of our services, we determined that virtually all of the children seen have some form of insurance; Medicaid, FAMIS, or commercial insurance."

That is a statement which has no bearing to the issues presented. Agreed, alot of the families have some sort of coverage for their children... that's how they got to the CDC in the first place! Medicaid covered the testing/evaluation for my sons DD Waiver eval. It doesn't change the fact that families needing these services in the future will need to A) Take 3 entire days off of work to make the trips to Harrisonburg for the 3 needed visits. Gas expense, loss of 3 days wages, specialized child care for TWO of the three days are all to be included in that concern. B) The potential trauma to the patient in question. A lengthy trip down, 6 hours (conservatively) of evaluation and then a lengthy trip back. Uncomfortable and exhausting for a NT (neurotypical) person. TRAUMATIC for people with special needs.

2) "We also found that our contractors were seeing significantly more children, when compared with the local health department Child Development Evaluation model."

Less centers + absorption of multiple CDCs to those already overburdened centers = longer waiting lists and even more so overburdened centers. How can this be more efficient? More people in less centers doesn't make sense at all from an efficiency standpoint.

3) "As the funding for programs has tightened, VDH has been identifying opportunities to continue to meet pediatric developmental needs in the most efficient and cost-effective manner."

The most pressing question about that statement is this: It is known that the VDH was told to make budget cuts, but not HOW and WHERE to make such cuts. Why did you go for special needs children? What was passed over in favor of the CDCs? I'm hoping that your budget for the past few years is a matter of public record, because I would most certainly like to see it. Additionally, the families which have no choice but to find a way down to JMU may be utilizing Logisticare. So... medicaid will be billing the VDH (your budget) to either A) pay for gas OR B) pay for gas AND the driver provided thru Logisticare AND maintenance on the vehicles. And C) potentially pay for lodging. Not to mention your "private contractors" who almost certainly dont fall under the state employee pay scale. I'd be willing to bet that they earn a bit more than state employees. Apparently, what you are "saving in the front end, you are paying for in the back end"

So, here is what closing the CDC will REALLY accomplish: Blue collar families who CAN'T afford the time-off/gas/specialized child care will NOT BE ABLE go to Harrisonburg to have their children evaluated. These children will not be able to receive the essential services needed to help them grow to be capable / well adjusted / productive citizens of this state. You are potentially ruining the future for numerous children and adults in the state of Virginia, and the lives of their families as well.

Please keep in mind that these closures impact A LOT of people. Intellectually Disabled as well as Developmentally Disabled. ALL wonderful people and ALL deserving of an opportunity to improve/grow/participate in their communities. Closing the CDC will keep that from happening for many.

The good part is that YOU have the power and the opportunity to fix that. I'm certain that you made these initial changes, not knowing the adverse effect it would have upon the population. And I'm doubly certain you would NEVER want to negatively impact special needs children and adults. Am I correct? I sincerely hope so.

I appreciate your time and eagerly await your response!

Friends and Enemies...

While I was in the hospital a few days ago, I was contacted by WHAG reporter Hayley Mason. She had contacted the Virginia Department of Health and told them that she wanted a response to the petition I had sent to them. She informed them that wether they responded or not, she would do the story. The body of that response is on my previous blog <--- click to read it. She also came to my home and got my response to the VDH statement... Click to read the WHAG news story

Today, I received my response from them:

CLICK TO ENLARGE

junk, huh? Doesn't even come close to addressing the issues laid out in the petition! They will be hearing from me, you can take that to the bank! Want to speak out with me??? The contact info at the bottom of that letter is Sidnee Dallas, 804-864-7716 and Sidnee.Dallas@vdh.virginia.gov

On the other end of that spectrum... Delegate Beverly Sherwood sent a letter thanking me for personally delivering the petition, and enclosed a copy of a letter she sent to the Commissioner of the VDH. 

How's that for awesome???

If you read the WHAG news story I linked at the top of this blog, you will see that Senator Jill Vogel chimed in, defending the CDC and throwing her hat into the ring to fight for us!

If you are having difficulty reading these letters, you can find them in the photo albums on NSVARs Facebook Page

I am very thankful for the support shown by Senator Vogel and Delegate Sherwood! And I certainly hope the families affected by the CDC closure are as well! 

GOOD DEEDS DO NOT GO UN-NOTICED!!!