A Letter to the North Carolina General Assembly From North Carolina Autism Families

Dear Senators, Representatives, and those Interested in Autism Insurance Reform:

As Autism Dads we have spent the last several years doing something that none of us ever thought that we would do. What is that you may ask? It is spending hours lobbying for a bill that will provide our children with insurance coverage for therapies that will help them in ways that only Autism Parents can understand. You see, to most people, autism therapies are just another therapy in a litany of possible medical treatments for the plethora of illnesses and ailments that affect American Society. But to us, as parents of children who are on the autism spectrum, these therapies are miracle treatments that we see making big changes to our children right before our eyes. These therapies work. These therapies are what give us hope and belief that our children will grow up to be productive and independent adults who will make a meaningful contribution to society in many many ways.

With all of that said, it saddens us to see so much misinformation being taken as truth during the consideration of this legislation.  We felt that it was time for the General Assembly and the public to hear not from insurers or the provider groups on this issue, but to actually hear from North Carolina Autism Families, such as ours, who will be most affected by SB 676.

So, what are our thoughts on the bill? Quite frankly, we have concerns with the bill that we hope will be addressed before the bill is enacted.

Before getting into our concerns, we wanted to express our appreciation to Senator Apodaca and others in the Senate and House for taking an interest in the insurance issue and advancing a bill. It means a lot to us and our families that this issue has made it to the forefront and seems to be advancing to a place where coverage will be provided in some form.

We also want to point out we understand that the language of SB 676 has come about as the result of negotiations with representatives from the insurance industry and autism provider groups. Certainly all legislation is negotiated by the stakeholders and a key aspect of all negotiations is that no party gets exactly what they want.  However, we, the autism families, are also stakeholders and we do not believe that we were ever incorporated into that negotiation.  Accordingly, we hope you will consider our points prior to coming to a conclusion on a final form of SB 676 to be enacted.

In the spirit of cooperation and respect to the process and not asking for a redraft or full reconsideration of the matter, we are focusing our requests for change to the bill on one main point that we believe is of the utmost importance to our families and other autism families in North Carolina.  We hope that you will see by our limiting our request to this point that we are not trying to be difficult, but instead are only trying to make sure this bill ends up protecting our children.

We also point out that with respect to the yearly cap of $40,000.00 for coverage of adaptive behavior treatments and the age limit of 18; we understand that these limits were reached as part of the negotiations.  We do not ask for these to be renegotiated.  Indeed, the language we suggest below is meant to preserve the limitations that the insurers and provider organizations have agreed to.     

What we do ask for is different language to permit the utilization of these caps.  The language in SB 676 allows insurers to utilize caps, but it also removes “autism spectrum disorders” from the protections of federal and state Mental Health Parity Protections.  The revised N.C.G.S. § 58-3-220 that is included in SB 676 is very clear that autism spectrum disorders will be excluded from the Mental Health Equity requirements, alongside only substance-related disorders, sexual dysfunctions not due to organic disease, and “V” codes. Although we understand that the state mental health parity statute (N.C.G.S. § 58-3-220(i)) will continue to provide that a group health plan will still have to comply with “all applicable standards of Subtitle B of Title V of 10 Public Law 110-343, known as the Paul Wellstone and Pete Domenici Mental Health Parity  and Addiction Equity Act of 2008, and the applicable regulations, as amended” and Subsection 2(i) of the bill will do the same, we do not believe this will result in our children maintaining the protections of Mental Health Parity. We take this position for the following reason.  It is our understanding that federal Mental Health Parity Protections apply only to “mental health conditions,” as defined by the applicable insurance plan and in accordance with applicable federal and state law.  By changing North Carolina state law, SB676 will give the insurance companies the permission to define “autism” as not a mental health condition (even though autism is a mental health condition per the DSM).  Once insurers adopt this definition of autism as not a mental health condition, there will be no “applicable standards” in the federal mental health parity law and thus no federal Mental Health Parity Protections will apply.  Surely you understand then why this is a concern for us.

In order to illustrate our point, consider a simple analogy.  What the bill will allow the insurance companies to do is in essence the equivalent of allowing a farmer to call a banana a “vegetable” rather than a “fruit” in an economy where vegetables are allowed to be sold for a higher price than fruits.  Clearly this is not fair to our children or our families.

Rather than remove these Mental Health Parity Protections from our children, the insurance companies could satisfy their concerns regarding the enforceability of SB 676’s coverage caps by adopting a simple change to proposed N.C.G.S. § 58-3-192 that would make it read: “Notwithstanding the definition of 'mental illness' in G.S. 58-3-220, 58-51-55, 58-65-90 and 58-67-75, coverage for adaptive behavior treatment under this section may be subject to a maximum benefit of up to forty thousand dollars ($40,000) per year and may be limited to individuals 18 years of age or younger.”  With this change, we believe the insurance industry and the autism families would each get something that they agreed to and our children would not risk losing Mental Health Parity Protections. 

As an alternative, we ask that you demand that Blue Cross/Blue Shield and other North Carolina insurers issue written statements that they will not apply to autism benefits financial requirements or quantitative or non-quantitative treatment limitations that are more stringent than those applied to substantially all medical/surgical conditions under their policies, which is what would be required under federal mental health parity law.  After all, if it really is Blue Cross/Blue Shield’s and the other insurers’ intent to continue to acknowledge our children’s Mental Health Parity rights, they should have no problem issuing such a statement.

We appreciate this letter has gotten lengthy and we acknowledge that and are sorry for it.  However, we hope you will understand what this legislation means to us and to our children and we hope you will make sure it is legislation that affords our children the coverage and the protections that they deserve.

                                                           

Brian Pearce                                  Kyle Robinson                              John Mies

Charlie’s Dad                                Samuel’s Dad                                Jack’s Dad

1711 Swannanoa Drive                 535 Cedar Ridge Drive                 7102 Leaning Tree Dr.

Greensboro, NC 27410                 Winterville, NC 28590                  Greensboro, NC 27410

bpearce@nexsenpruet.com           jkrbhr2007@gmail.com                john.mies@volvo.com

336-404-0214                                843-408-6870                                336-255-2521

                                        

Rather than just hear from us, we also wanted to let you hear from other North Carolina families who share our concern with SB 676 and their names and addresses follow:

NORTH CAROLINA AUTISM FAMILIES IN SUPPORT OF THIS LETTER

·         Caroline M. Pearce, Mom, 1711 Swannanoa Drive, Greensboro, NC 27410

·         Bobbie H. Robinson, Mom, 535 Cedar Ridge Drive, Winterville, NC 28590

·         Wendy B. Mies, Mom, 7102 Leaning Tree Drive, Greensboro, NC 27410

·         Delores A Revill, Grandmother, 112 Skygrove Drive, Holly Springs, NC 27540

·         Paul J. and Kimberly K. Norcross, Mom and Dad, 1109 Forest Hill Drive, High Point, NC 27262         

·         Trudy J. Pearce, Grandmother, 7612 Wingmont Drive, Charlotte, NC 28269

·         Doug Brown, Dad, 7900 NC Highway 150 East, Brown Summit, NC 27214

·         Bob and Donnie Holder, Grandmother and Grandfather,  910 Marguerite Drive, Winston-Salem, NC 27106

·         Zack and Lauren Matheny, Mom and Dad, 3204 Round Hill Road, Greensboro, NC 27408

·         Heather and Ben Pardue, Mom and Dad, 3903 Katie Drive, Greensboro NC 27410

·           Dana Pinnix, Mom, 4117 Youngstown Drive, Greensboro, NC 27405

·         Shea Capps, Mom, 100 Woodbine Court, Jamestown, NC 27282

·         Rita Capps, Grandmother, 100 Woodbine Court, Jamestown, NC 27282

·         Jennifer Capps, Aunt, 100 Woodbine Court, Jamestown, NC 27282

·         Consuelo Robbins, Mom, 5721-C Bramblegate Rd. Greensboro NC 27409

·         Sarah Wade, Cousin, 5939 W. Friendly Avenue, 10F, Greensboro, NC 27410

·         Mary Cook, Grandmother, 4359 Weatherton Drive, Kernersville NC 27284

·         Linda and David Cobb, Aunt and Uncle, 376 Possum Road, Franklinton, NC  27525

·         Vanessa Budet and Juan Jose Flores, Mom and Dad, 4910 Fox Chase Rd, Greensboro, NC 27410

·         Sheryl and Ed Rider, Aunt and Uncle, 201 Fairridge Drive, Jamestown, NC  27282

·         Mike and Debbie Brooks, Grandmother and Grandfather, 5805 Beckenham Way, Oak Ridge, NC 27310

·         Scott and Melissa Brooks, Uncle and Aunt, 6006 Chalet Drive, Oak Ridge, NC 27310,

·         Shirley Register, Mom, 221 Brookberry Road, Holly Springs, NC 27540

·         Todd and Karen Allen, Uncle and Aunt, 206 Barden Drive, Kernersville, NC 27284

·         David Wells, Uncle, 202 Barden Drive, Kernersville, NC 27284

·         Miranda Balla, Mom, 9 Kelvinton Court, Greensboro NC 27410

·         Jamie McCarty, Cousin, 246 Stone Meadow Ct, Kernersville, NC 27284

·         Josh and Kim Edgar, Mom and Dad, 3907 Pepperbush Drive, Greensboro, NC 27405

·         Felice and Richard Brenner, Mom and Dad, 464 Sheffield Drive, Winston-Salem, NC 27104

·         Michelle Leatherman, Mom, 1504 Meta Court, High Point, NC 27265

·         Jeff Leatherman, Dad, 104A Wafco Lane, Greensboro, NC 27401

·         Eric J. and Sonya B. Pearce, Uncle and Aunt, 619 Lorain Avenue NW, Concord, NC 28027

·         Joanne and Frank Ovnic, Grandmother and Grandfather, 1200 Davenport Court, Kernersville, NC 27284

·         Paul Ovnic, Uncle, 4580 Emily Drive, Kernersville, NC 27284

·         Krystal Ketner, Mom, 4111 Landerwood Drive, Greensboro, NC 27405

·         Butch and Elizabeth McConnell, Grandmother and Grandfather, 2271 Wynbourne Dr., Gastonia, NC 28056

·         Jenny Gandee, Mom, 2000 Beech Grove Drive, Greensboro, NC 27455

·         Daniel and Cara Billings, Cousins, 6 Friendly Acres Court, Greensboro NC 27410

·         Chris Hocker, Dad, 5308 Lange Trail, Greensboro, NC 27407

·         Andrea Worthington, Mom, 5109 Hartridge Way, Greensboro, NC 27407

·         Shanna Dowd & Malcolm Richardson, Mom and Dad, 6006 White Chapel Way, Greensboro, NC 27405

·         Tim Newman, Dad, 7800 Foxcroft Lane, Charlotte, NC 28213

·         Katharine and Scott Kollins, Mom and Dad, 2722 Spencer Street, Durham, NC 27705

·         Kent Adams, Dad, 614 Rollingwood Drive, Greensboro, NC 27410

·         Matt & Sara English, Mom and Dad, 1230 Willowlake Drive, Winston Salem, NC 27106

·         Harold and Melba Little, Mom and Dad, 1421 Preston Drive, Tarboro, NC 27886

·         Allison and Brent Brewer, Mom and Dad, 3656 Oak Forest Drive Winston Salem NC 27127

·         Barbara and Paul Brewer, Grandmother and Grandfather, 3661 Oak Forest Drive Winston Salem, NC 27127

·         West and Jeni Fowler, Mom and Dad, 241 N Avalon Road, Winston-Salem, NC 27104

·         Penny and Curtis Jarvis, Grandmother and Grandfather, 346 Cloverdale Lane Wilkesboro, NC 28697

·         Cory Jarvis, Uncle, 346 Cloverdale Lane, Wilkesboro, NC 28697

·         Cortney and Nick Adams, Aunt and Uncle, 349 Cloverdale Lane, Wilkesboro, NC 28697

·         Brian Brewer, Uncle, 1095 Lewis Road, Walnut Cove, NC 27052

·         Ava Neyer, Mom, 5843 Pettigrew Drive, Fayetteville, NC 28314

·         Monte and Laurie Brackett, Mom and Dad, 8203 Kelly Ford Road, Oak Ridge, NC 27310

·          Darin and Ashley Wells, Cousins, 812 Eastgrove Ct., Kernersville, NC  27284  

·         Terrance A. Gerald, Dad, 1729 Tredegar Road, Kernersville, NC 27284

·         Grace Sue Billings and Theodore Billings, Great Grandmother and Great Grandfather, 1931 Dehart Church Road, McGrady NC 28649

·         Nancy and Wilmer Leatherman, Grandmother and Grandfather, 3947 Hutton's Lake Ct., High Point, NC 27265