email invite to Representative Nelson Dollar

Republican Representative Nelson Dollar, from Cary, NC, has served 4 terms in the NC House of Representatives for District 36 of Wake County and was a Primary Sponsor of House Bill 916. Currently, he is Co-Chairman on both the Health and Human Services (Standing) Committee and the Joint Legislative Oversight Committee on Health and Human Services (Non-Standing) Committees, and a Member on the Health and Human Services Subcommittee on Mental Health. On February 15th of 2012, he filed for re-election. 

25 March 2012

Sent via email:

Dear Representative Dollar,

My name is Crystal J. De la Cruz - Hopper. Last month you and other members of the North Carolina General Assembly received a copy of a letter I sent to Governor Beverly Perdue. As I understand, both you and Senator Hartsell forwarded my correspondence along to Dr. Pat Porter; I'd like to take this opportunity to thank you for interest and assistance in opening a dialogue as a parent of a special little girl, Isabel.

While I sincerely hope that at some point in the near future, I might have the opportunity to meet with you personally to discuss concerns regarding the new Waiver changes, I can only imagine the overwhelming magnitude of the plate now before you and the stress you must be under dealing with issues at hand, so I recognize you probably could use a break. I am writing to you now to extend a personal invitation (all political chatter aside) for you and your family to come out and enjoy a game of baseball as perhaps you have never before experienced...

I profess, I've never been very sports-minded, perhaps because I personally lack the coordination required to walk and chew gum at the same time. My husband on the other hand, as I often jest, would no doubt find appeal in competitive squirrel-wrestling if it were am athletic event. I do enjoy World Cup soccer, Ice Hockey and occasionally Collage Basketball depending on who's playing so rarely do we enjoy sporting events as a family. Of course since our five-year-old son, Liam, has been taking Tae Kwon Do (and recently earned his Green Belt), I've added that to my short list of athletic interests, however the idea of baseball has always bored me to tears... that is, until our daughter joined the Miracle League of the Triangle.

Established in 2006, the Miracle League of the Triangle, is an amazing non-profit organization orchestrated by an extraordinary group of dedicated volunteers whose goal is simply to provide children with special needs an opportunity to play baseball.

There are numerous teams each with their own jerseys, hats, and coaches. There are bats and mitts, concession stands, a real ball field, bleachers, and dugouts... just like in baseball. There is even a proper baseball announcer and coolest of all, every child has their own "walk out" song.

Our Bella chose Eddie Murphy's rendition of "I'm a Believer" from the original Shrek soundtrack.

And this is why I'm now a baseball fan:

Watching the faces of all these kids out there playing ball... some smiles couldn't be missed and some wore theirs on the inside... some run their little hearts out around the bases and turn cartwheels, some walked slowly with braces and had to be carried to home, some made it on wheels, and one kid rounding second that just decided to sit down and take a load off mid-game (yep, that would've been MY child)... But no one struck out and everybody won... and the pride which ruminates from the field, from the stands, from each little being is nothing short of miraculous... because they are each a part of something bigger than themselves, something fun and spirited and above all, something that included them, counted them, and recognized them... cheered for and acknowledged them and for an hour, gave each child a sense of normalcy within their own diverse community of teammates, coaches, buddies, parents, friends, and even strangers where no one stared, no one ignored them and pretended that they weren't there... and everyone celebrated the fact that they were.

I would like to invite you Representative Dollar to take a time out and swing by with your wife, Lorrie, and son, Ian, for an afternoon, or even an hour, of sheer magic. Just one game. --Few things in my life raising a child with profound special needs have ever revived my soul and renewed my faith in humanity quite the way watching these kids play baseball has... I would be honored to share such a moment with you and yours.

I've attached both my daughter's schedule (Isabel plays on the Marlins) and the full team schedule for the Spring season, as well as my original letter to Governor Perdue just to refresh your memory, if needed, of who I am.

Miracle League games are held near to you in Cary at Andy's Foundation Field, Adams Elementary School, located at 805 Cary Towne Boulevard.

And you have my most sincere promise, should you wish to join us (and I dearly hope that you will), that I will do my utmost to assure your presence is respected and your time protected for sole purpose of enjoying some baseball magic and family. Hot dog's on me.

My contact information is below.


Sincere regards,
--

Crystal J. De la Cruz - Hopper
contact information...

email from Dr. Pat Porter

March 6, 2012

Response via email:

From: Dr. Patricia Porter, UNC adjunct Professor / DD and Policy Expert / hired Consultant to the NC General Assembly:


Hello Ms. De la Cruz-Hopper,

It was a pleasure to speak with you last week. As you know, Senator Hartsell and Representative Dollar asked that I contact you in response to the letter you sent to Governor Perdue and copied to members of the General Assembly. They were impressed with the comprehensiveness of your representation of your daughter’s status and the struggles you have had assuring that she receives the services and supports she needs as well as your concerns about issues that you have heard and read that may come from changes related to the statewide implementation of the Medicaid B-C Managed Care Waiver. You surely have done your homework and I believe you have done your best to become well informed about the changes to come in our MH-DD and SA system of services.

As you noted at the end of our conversation, there is a good bit of misinformation coming out about these planned changes and in some instances, an absence of factual information for families. As your own LME ( Wake) proceeds to prepare for the transition from a fee-for-services to a managed care operation, you are wise to make sure that you are being made aware of these plans and the potential impact of the changes. I understand that information and discussion opportunities are being planned and there is a request for questions currently posted on the Wake website. http://www.wakegov.com/humanservices/waiver/questions.htm

You may know that the session law (attached) directing the statewide expansion of the B-C Waiver has a number of specific provisions that require both the Department of Health and Human Services and the Local Management Entities to assure that the system is structured so that stakeholders, such as yourself, have meaningful knowledge of and input into the development of the new operation now and as it is established. LMEs have been conducting meetings with those receiving services and those currently providing services to discuss the changes and I hope you have been able to participate in those and in subsequent such meetings. Some of these forums have been conducted by the Jordan Institute for Families of the University of North Carolina School of Social Work under the direction of Professor Gary Nelson with a particular focus on the outcomes we hope to achieve with this system as they effect persons with disabilities and their families. The Department of Health and Human Services has recently established a Waiver Advisory Council http://www.ncdhhs.gov/mhddsas/providers/1915bcWaiver/index.htm comprised of stakeholders for the purpose of obtaining advice and council on the development of this new system. These meetings are open to the public and I would encourage you to attend and participate. There is an abundance of information about the B-C Waiver implementation on this website and you may want to take a look at the Strategic Plan listed there.

As we discussed, this is a significant change for the state of NC but a change that was deemed necessary by both the Department of Health and Human Services and by vote of the NC General Assembly. Transitions of this kind are necessarily disconcerting. While it is understandable that many individuals who have received services in the current system and some who have delivered those services would like the system to continue under its present structure, the decision was made that this is just not feasible. There are long waiting lists for service, some providers have not been of highest quality , some individuals and families have had to endure a revolving door of service providers with no reliability or consistency in service delivery, research has demonstrated that there is currently no relationship to the intensity of need of those who receive services and the services they receive. Some with relatively low need receive the highest cost services while many with very high need receive no services at all. In these lean budget times and with the pending changes in federal health care set to go into place in 2014, it is critical for the General Assembly, in concert with the DHHS and stakeholders to develop an accessible system that is of highest quality, responsive to the needs of people with IDD, MI, SA and their families and well managed to assure that both federal and state dollars are fairly and equitably allocated to the best benefit of the diverse population in need of services. Accountability is built in at every step with both internal and external evaluation of both program outcomes and expenditures. The General Assembly is committed to the development of this system with the meaningful input of individuals with disabilities and their families and with a foundation in evidence based outcomes. Your input and that of other key stakeholders is vital in assuring that the system achieves these intended goals.

I hope I was helpful as I answered your specific questions about the implementation of the B-C Waiver and its potential impact on services for your daughter and other people with IDD in our state. You suggested that you would like to develop a list of additional questions that we could discuss in a face-to-face meeting and I am happy to do that. Please let me know when you would like to schedule that meeting.

I look forward to speaking with you again.


Pat Porter

Patricia Porter, PhD, Consultant  

Health and Human Services 

North Carolina General Assembly
301-B Legislative Office Building
300 N. Salisbury Street
Raleigh, NC 27603
(919) 301-1982