What's New in February

February 2012 events and updates.

• expanded About HB 916 page.
• 02/28/2012: Got a phone call today from the UNC developmental disability and policy expert (not affiliated with HHS) hired by the NC General Assembly to consult and advise them on the Medicaid Waiver issue. Senator Hartsell delivered my letter to her. Had a great chat and will be meeting with her in person very soon!
• posted THE Letter to pages, My Letter and Correspondence.
• Added Disability Rights of NC's 2010 Complaint to the US Department of Justice regarding the State's ADA and Olmstead violations on CAP-MR/DD page.
• expanded more on How to Advocate.
• Emailed digital copy of THE Letter with email enclosure to members of the NC Senate, 2/25.
• Emailed digital copy of THE Letter with email enclosure to members of the NC House of Representatives, 2/25.
• Posted copy of email to NC Representatives.
• Posted copy of email to US HHS Commissioner Lewis and Deputy Commissioner Kendall.
• New post: Correspondence page.
• updated Speak Up! with download-able text list of email addresses for the entire NC House and Senate available to 'copy + paste' into your email client.
• Emailed digital copy of THE Letter to Commissioner Sharon Lewis and Deputy Commissioner Jamie Kendall of the US HHS.
• Added Title 42. The Public Health and Welfare. Chapter 144. Developmental Disabilities Assistance Bill of Rights; Programs for Individuals with Developmental Disabilities; General Provisions [42 USCS § 15002] to US Case Law page.
• Updated Speak Up! with additional contacts. 
• THE Letter went out via email to Cindy Mann and Connie Martin at the US CMS, 2/24.
• THE Letter went out to Governor Perdue in today's mail! 2/24.
• New post page about THE Letter (My Letter).
• updated CAP-MR/DD page: 
• added 04/14/2010  Comparison of CAP, PBH, & Innovations Waivers Presentation by DMADDSA Director, Leza Wainwright.
• added 05/20/2010 DD Council Presentation on Consumer 1915bc Waiver Questions.
• added 08/25/2011 DMHDDSAS Commission Meeting Minutes.
• added 2003 NC MHDDSA Service Definitions Manual.
• added NC DHHS 10/2011 Trustfund for DMHDDSA and Bridge Funding Needs Report. 
• updated CAP-MR/DD page: 
• added NC DHHS 01/2012Waiver Status Report to the Joint Legislative Oversight Committee.
• added NC DHHS's 07/2010 Strategic Plan Process for 2010-2013 Report to NCGA.
• added NC DHHS's 2007 Olmstead Report.
• added different CAP Manual versions and comparisons.
• updated US Case Law page with Olmstead case law documents.
• Added "Related Legislature" section to NC HB 916 page to include NC Senate Bills relating to the Medicaid Waiver program.
• Updated US Case Law and NC HB 916 pages and posted to both: 2011 Report of Investigative Findings from US Department of Justice re: NC's violation of Title II of the ADA and citing the State's failure to comply and meet its obligations under federal law.
• Updated Speak Up! page to include additional contacts, detailed information for contacts, their rolls, election status, etc.
• Expanded more on How to Advocate page.
• Created How to Advocate page.
• 02/18/2012:
• Created Speak Up! page with contact information for who to contact regarding NC HB 916.
• Created US Case Law documents page.
• Created NC HB 916 documents page.
• NO2NCHB916 Blog and Facebook group established, 2/17/2012.

[ What's New Main ]

enclosure email to CMS

February 24, 2012

Sent via email:

To: Centers for Medicare and Medicaid Services

Cindy Mann, JD, Deputy Administrator / Director of State Operations [Cynthia.Mann@cms.hhs.gov] 

Ms. Connie Martin, Waiver Analyst for NC [connie.martin@cms.hhs.gov]

Subject: Letter to NC Governor Perdue re NC HB 916 / 1915(b)(c) NC Medicaid Waivers

Dear Ms. Martin and Ms. Mann,

Per my recent conversation with Ms. Martin, please find attached my letter and enclosures to North Carolina Governor Beverly Eaves Perdue regarding North Carolina House Bill 916 in relation to the 1915(b)(c) Medicaid Waiver programs and its detrimental impact to the supports and services of the Developmentally Disabled recipients and their families across the State of North Carolina. Including my daughter, Isabel.

This letter will go out in tomorrow's postal mail to Governor Perdue and subsequently to the members of the NC House of Representatives, Senate, and others copied in days following.

I respectfully request to be kept abreast of any developments, actions, investigations, and the like, relating to North Carolina's restructuring of the 1915(b)(c) Waivers under HB 916

Please do not hesitate to contact me at any time with questions and for further dialogue.

Thank you in advance for your time and attention on this very important matter.

Kind regards,

--

Crystal J. De la Cruz - Hopper

Mother, Disability Advocate, & Concerned NC Citizen

contact information...

email to NC House of Representatives

February 24, 2012

Sent via email; with attached letter to Governor Perdue and enclosures:


To: Members of the North Carolina House of Representatives

Subject: Letter to NC Governor Perdue re NC HB 916 / 1915(b)(c) NC Medicaid Waivers


Dear Member of the North Carolina House of Representatives,

While I may not be among your direct voting constituents, I am writing to you as concerned North Carolina citizen, disability advocate, and mother of a beautiful, innocent daughter with profound special needs who, along with her family members, will be directly and critically affected by the implementation of the new 1915(b)(c) Medicaid Waiver plan under NC House Bill 916 (now SL 2011-264) if allowed to proceed as intended.

Please find attached, my letter and enclosures to Governor Beverly Eaves Perdue sharing our story and explaining, in more detail, the concerns shared by many families across our state regarding NC HB 916.

I greatly appreciate you taking the time to read my words as I can think of no more important topic on the State's Health and Human Services agenda. I invite you to please contact me at any time should you have any questions, desire further dialogue, and to meet with me personally.

I respectfully request a written response relaying your position and intentions regarding North Carolina House Bill 916. I would like to be kept abreast of of any developments, actions, investigations, decisions, changes, and the like, relating to North Carolina's restructuring of the 1915(b)(c) Waivers under HB 916, services and supports, and the implementation of those services and supports.

It is my most sincere hope that you will carefully examine and consider this matter, make an effort to communicate with those who will be directly affected, to include not only families but small business service providers and case managers in the field, and most importantly, know and understand the desperate needs of those whose very quality of life lies now in your hands.

Thank you in advance for your time and attention on this vital issue detrimental to so many - the most vulnerable of North Carolina’s citizens and the families who love them.

I look forward to your reply.


Sincere regards,
--
Crystal J. De la Cruz - Hopper
Mother, Disability Advocate, & Concerned NC Citizen
contact information...

email to NC Senate

February 24, 2012
Sent via email:


To: Members of the North Carolina Senate

Subject: Letter to NC Governor Perdue re NC HB 916 / 1915(b)(c) NC Medicaid Waivers

Dear Member of the North Carolina Senate,

While I may not be among your direct voting constituents, I am writing to you as concerned North Carolina citizen, disability advocate, and mother of a beautiful, innocent daughter with profound special needs who, along with her family members, will be directly and critically affected by the implementation of the new 1915(b)(c) Medicaid Waiver plan under NC House Bill 916 (now SL 2011-264) if allowed to proceed as intended.

Please find attached, my letter and enclosures to Governor Beverly Eaves Perdue sharing our story and explaining, in more detail, the concerns shared by many families across our state regarding NC HB 916.

I greatly appreciate you taking the time to read my words as I can think of no more important topic on the State's Health and Human Services agenda. I invite you to please contact me at any time should you have any questions, desire further dialogue, and to meet with me personally.

I respectfully request a written response relaying your position and intentions regarding North Carolina House Bill 916. I would like to be kept abreast of of any developments, actions, investigations, decisions, changes, and the like, relating to North Carolina's restructuring of the 1915(b)(c) Waivers under HB 916, services and supports, and the implementation of those services and supports.

It is my most sincere hope that you will carefully examine and consider this matter, make an effort to communicate with those who will be directly affected, to include not only families but small business service providers and case managers in the field, and most importantly, know and understand the desperate needs of those whose very quality of life lies now in your hands.

Thank you in advance for your time and attention on this vital issue detrimental to so many - the most vulnerable of North Carolina’s citizens and the families who love them.

I look forward to your reply.


Sincere regards,
--
Crystal J. De la Cruz - Hopper
Mother, Disability Advocate, & Concerned NC Citizen
contact information...

Parent Perspective: THE Letter

"THE Letter"

Note: Script of the letter posted below or download the letter and enclosures in its entirety.

February 23, 2012

After several months of research and writing - and a minor 'set-back' involving medical drama when my daughter was diagnosed last month with Type 1 Diabetes - it is done! I have begun to refer to this project, not-so-fondly, as THE Letter.

THE Letter has cost me much sleep and sanity, time I will never get back, many phone calls and emails with various helpful and knowledgeable parents and professionals (you know who you are and you have my eternal thanks!) and arguments with my tired, but very supportive, husband who has picked up all the slack I've left behind. Whether or not it has been worth it, remains to be seen, though as a mother of a special, magical little girl, I simply don't know how to do any differently.

Last week, when I hit the final key stroke and realized with amazement and relief that it was indeed, at long last, finally done, I had to read it to someone or I was going to burst. I called my friend and case manager, a jewel amid jewels (a woman who has already gotten heat for the numbers of appeals she has filed on behalf of her recipients for services under the new Waiver plan); she listened quietly and cried through the whole thing. When I finished, she said simply, "Crystal, that is a work of art!"

I'm not trying to toot my own horn here, really I'm not. Yes, I seem to have a knack for this stuff but truthfully, I don't even feel as though the words came from me. I asked for the perfect words and this is what came. I just feel that I did what I had to. What I always do, for the sake of my child and her special peers...

She asked if she could forward it; I told her that when the proverbial cat was out of the bag, she was welcome to send it anywhere she wanted with my blessing and gratitude. Then she said something that really choked me up: "You have no idea what this letter is going to mean to other parents... they are so tired and confused, most have just given up..." 

And that is why I started this blog.

THE Letter goes out tomorrow to Governor Perdue, Friday, February 24th. I will post the 128 page pdf version of my letter and enclosures in it's entirety on Monday evening. 

Why 128 pages? Well, in addition to the 10 page letter, 1 page list of enclosures, and 4 pages listing copied recipients, I am including photos, an article I wrote while employed at FPG Child Development Institute UNC-CH (which now appears in the textbook, Educating Exceptional Children), and 'a small sampling' of my daughter's paperwork that I'm certain most of these folks making the decisions about our children's lives  and services have never seen (the ones we get sick of looking at) - the paperwork that represents my daughter to the state and to Medicaid. As I have quite the long list of recipients, I will be distributing those in days following.

I plan to also post, the personal enclosure letters I send to key members of legislature as well as any correspondence I receive in response.

23 February 2010 2012

Via US Mail and Facsimile # 919-733-2120

Governor Beverly Eaves Perdue

Office of the Governor
Constituent Services Office
116 West Jones Street
Raleigh, North Carolina 27603

Re:     2011 North Carolina House Bill 916 

A Desperate Plea for Help.

Dear Governor Perdue,

Many years ago, I attended an advocacy presentation on Developmental Disabilities at the William and Ida Friday Center for Continuing Education at The University of North Carolina at Chapel Hill. I was a single parent then of a beautiful developmentally disabled child with profound special needs and worked at the FPG Child Development Institute. –I deeply regret that I cannot recall in this moment precisely which of the numerous disability advocacy and special education events this was (you see, I have attended so many over the years as a special parent and advocate fighting for the rights of my child) but I do remember vividly the speech the keynote speaker gave that day:

She told us about a member of her family, a sweet, loving developmentally disabled girl and how she was once shoved in a trash can by her very own teacher, discarded as garbage, by the one person who should have protected her, supported and encouraged her, set the example and sent the message to her peers that this child was precious too. (I think she may have even wiped away a tear; I know I did.) She told us how that had impacted her greatly such that the rights of the developmentally disabled community would always be a personal priority for her. She told us how we, as parents, advocates and teachers, inspired her and though, as a society, we’d come so far from those days her relative endured, the road was yet long. She said, ‘No child should ever be thrown away.’

That speech was powerful, emotional, motivating and imbuing of hope.

My daughter, Isabel, has a one of a kind genetic rearrangement never documented prior to her birth; she is the only one. Last month was her 14^th birthday and while most girls her age are painting their nails and texting boys, Isabel remains socially / emotionally a non-verbal, incontinent toddler, complete with pull-ups and tantrums.

To the State of North Carolina, the NC Department of Health and Human Services, the Division of Medical Assistance, and Medicaid, my daughter is represented by the small sampling of papers beneath the words you read now, absent hoards of medical records. I would like very much to tell you what an awesome, magical little person she is, how sweet and mischievous, and how she adores her 5-year-old ‘big little brother,’ Liam; I’d love to tell you what a strong personality she has and about her fantastic sense of humor, and how, in her short life, she has been my greatest teacher. —Though instead, I am writing now to share with you the details of our life, because as her mother, this is how I love her…

For over 7 years, I struggled as a single mother and sole provider. I worked full time, paid bills, owned my own home, and shopped for groceries when I could afford them. I cooked, cleaned, cared for my child, dressed her, and have wiped her bottom every day of her life. I’ve carted her around continuously to doctors, specialists, and therapists, attended countless Individual Education Program (IEP) meetings, seminars, and workshops, and have been a strong and active advocate for my child and others over the years, enlisting the aid of senators and congressmen when necessary. I have served on boards for non-profit organizations, written published articles, taught other parents, fought for support for Special Education teachers, volunteered my time when I could, and have never once received public assistance. Even through a major back surgery and an ugly divorce, I did what I had to do because I had no choice; my daughter needed me to be that strong. But I could not have survived, could not have done any of it, and shudder to think what would have become of us without the CAP MR/DD (now I/DD) supports and services I received for my child.

I can only imagine I would have had no choice but to institutionalize my baby girl in such a facility as O’Berry Center, where I once worked while a student at Mount Olive College.

While I no longer carry this burden and responsibility alone, it’s still not an easy life. Isabel is entering adolescence, her challenging behaviors and frustrations are increasing. She is unable to communicate beyond her basic wants and needs (hungry, thirsty, sleepy, dirty…) and now, raging hormones and most recently, a diagnosis of Type 1 juvenile diabetes requiring a hospitalization last month. Every room of our home is adorned with child locks and safety gates and because she is compelled to be in constant motion, she never sits still, never rests, and neither does anyone else. Because we have no outside family support, it is a rare opportunity that my husband and I can even get away for dinner alone or a movie; in the 6 years we have been married, we have gone away twice for short weekends, one of those being a CLE he attended for work. Our life is unimaginable to outsiders, yet we are not alone in our isolation.

There are many other single parents of special children out there dependant upon the “proper supports” and services of CAP I/DD for survival. Perhaps you know that parents of minor children with disabilities cannot receive monetary supports or funding for caring for their child, while parents of disabled adults can; therefore, most have no choice but to work just to exist while strangers care for and raise their angels in their absence.

There are even more special dual-income families who barely makes ends meet; families who will likely be forced to quit a job without “proper supports.” There are countless tired families receiving supports who don’t have the time or the know-how to even begin to speak-up, because they don’t understand the dynamics of this financial agenda, to write a letter such as this one to their representatives pleading for help; families who can’t afford to take even a day off of work to go meet with their senator or congressman and what would they say? Most parents, and even professionals, do not fully understand what little ambiguous information that is out there to even articulate an intelligent argument.

And what of the aging parents with developmentally disabled adult children who have dedicated a lifetime of love, labor, and heartache caring for their child? Like the enormous room full at the Residential Supports Information Session I attended last month, who can no longer physically do it without “proper supports” – the dozens of exhausted elderly citizens whose hopes of relief I watched shatter as they were told there just aren’t enough options, not enough group homes, not enough residential programs, not enough room, not enough funding, and with the new Medicaid Waiver looming around the corner, threats of closure to existing group homes is becoming an increasing reality and the future holds even less answers.

The North Carolina CAP I/DD (formerly, MR/DD) Waiver program, promulgated pursuant to Section 1915(b) and (c) of the United States Social Security Act [42 U.S.C. § 1396o], and was authorized in 1981, acknowledging the greater need of supports for Developmentally Disabled citizens and thus providing a means for states to manage the costs of those needs with federal funding. Section 1915(b) Managed Care and 1915(c) Home and Community-Based Supports Medicaid Waiver programs afford states the opportunity meet the medical and direct care needs of its DD population and afford parents an alternative to institutionalizing their loved ones in an effort to save tax dollars and comply with the Rehabilitation Act of 1973 [5 U.S.C. § 790] and later, Americans with Disabilities Act (ADA) [42 U.S.C. § 12101 et seq.]. When one considers that the annual cost of institutionalization is, in some cases, estimated at over one hundred and twenty thousand dollars ($120,000.00) per resident, forcing families to ultimately surrender their loved ones is hardly the answer to resolving the state’s budget crisis long term.

“Proper supports” for a developmentally disabled CAP recipient is determined by the Support Needs Assessment Profile (NC-SNAP), a scale developed by a team of experts in the field of developmental disabilities over the course of 2 ½ years from 1997-1999. The SNAP tool is reassessed annually to determine an individual’s level of need for Daily Living, Health Care, and Behavior Supports. In some counties, the Supports Intensity Scale (SIS) is also used, which provides a more accurate overall reflection of an individual though is not required and therefore is seldom used. SNAP, while arguably flawed and limited in the client profile it presents, is the only consistently utilized tool for determining service needs. From the SNAP score, a recipient’s eligibility for number of service hours is determined. A “Person-Centered Profile” then outlines the individual’s life-skill and community goals a Habilitative Technician (CAP Worker) works on with their client based upon their level of needed care and allotted hours, which are reassessed and re-written annually in a Continued Needs Review (CNR).

You may be thinking, ‘but reports show that families receiving CAP supports don’t even utilize all of their approved hours as is’... The answer is so simple it befuddles me.

You see, I’m one of those families who doesn’t use all of the hours our level of need warrants and often haven’t throughout the decade or so that my daughter has received both CAP C and MR/DD. (In fact, my budget is quite low I’m told, based upon Isabel’s level of needs.) Allow me to explain why… In the last 10 years, I can recall no less than 19 CAP Workers / care providers to whom I have entrusted my helpless little girl; I cannot even remember all their names as the turn-over rates for these positions is quite high. (In special parent circles, a CAP Worker who sticks around past one year is Gold.) Consider the emotional and developmental damage that such constant inconsistency creates in the daily life of a child with special needs; learning a new person, loving a new person, and losing that person – over and over again (never mind what it does to the parent). And while there have been some wonderful trustworthy care providers in our life, I wish that were the only issue... During this parade of CAP Workers, practical strangers in my home and personal space, I have experienced: the physical abuse of my child when an employee pinched my 3 ½ year old numerous times leaving dark purple and green bruises on her tiny body, thousands of dollars worth of property stolen from my home, and a week’s worth of groceries devoured that I could not afford to replace; I had an employee who took my daughter on a date with her ex-husband she’d previously had a DVPO against who was unaware she was living with a new guy; I once had two employees who became friends and later found that they spend quite a bit of time hanging out together in bars smoking and drinking with my child in their care; one girl who was fired for drug abuse; and last but not least, yet another who filed a DSS complaint against me for “abuse and neglect” in retaliation for being terminated – an incident that wasted the time and resources of 5 separate agencies, including the Morrisville Police Department, Cedar Fork Elementary School, Wake County Human Services, and the Department of Social Services. And that’s just the stuff I know about; anything else that has happened throughout the years, my daughter is unable to tell me.

During the last Bush Administration, the federal Medicaid reimbursement rate was cut by eight dollars ($8.00) per hour, a significant amount when one considers the cost of overhead and employee salaries. Today, the average CAP Worker makes between nine to twelve dollars ($9.00-12.00) per hour when performing “Home and Community Supports” (HCS) services (this is the minimal time designated for working on pages and pages of specific life-skill goals and continuation of therapies, not unlike an IEP) and minimum wage to eight dollars ($7.15-8.00) per hour for “Personal Care Supports” (PCS) services (the bulk of allotted hours which includes bathing, grooming, toileting, etc.) and “Respite” (time built in for unscheduled relief). Comparatively, a Certified Nurse Aide 1 working in a long-term care environment in Wake County makes roughly $13.03 hourly, while a Wake County Teacher Assistant in Special Education averages $10.27 per hour and a Wake County Public Schools Custodian, $12.80 per hour, not including benefits or shift differential. For the record, the average Garbage Collector in the State of North Carolina is paid an average hourly rate of $11.75. A CAP Worker receives only their hourly wages with no benefits whatsoever when working consistently less than 30 hours weekly, not even mileage reimbursement to offset the cost of driving their clients around in their personal vehicles attending community activities as dictated by their care plan.

Suffice it to say that the vast majority of families not utilizing the maximum amount of service hours allotted are not choosing not to do so because the need is not present. Quite the contrary, there is a critical need that cannot be staffed with competent, quality, reliable, professional care providers dedicated to a profession that includes a daily routine of cleaning feces, urine, and vomit; preparing special foods and feeding; heavy lifting; changing G-tubes and catheters and diapers; administering medications; bathing and dressing; utilizing sign language and specialized communication devices; and completing endless amounts of paperwork tailored to a non-applicable medical model to justify their existence all while being subjected to nerve-racking and often abusive behaviors such as hitting and biting, because frankly, people can make a better salary emptying garbage cans than caring for an innocent human being unable to do for themselves.

There’s your answer, Governor Perdue, and the answer is that we families need more support not less.

NC House Bill 916 promises to reduce state costs by cutting consumer budgets for “Home and Community Supports,” and thus services, across the board with a fixed ceiling, regardless of individual need outlined by NC-SNAP. Granted, while “Personal Care Supports” will allegedly remain individualized, such a drastic change in services will only assure the lack of quality staffing for minimal pay and further reduce the quality of life for disabled recipients desperate to participate in community activities by placing them effectively under house arrest. Further decreasing options for recipients and their families, NC HB 916 intends to limit consumers’ already limited choices by establishing a pre-approved provider network.

Among other proposed changes promising to increase efficiency under HB 916, the NC Department of Health and Human Services previously reported plans to establish a central call center to filter consumer calls, placing yet another barrier between families and service needs; they were careful to note however, that the call center would be staffed by non-professionals who would not be able to answer specific questions, though promising a return call within 48 hours. That is insulting.

And what of the appeals process? Considering that HB 916 essentially grants the State of North Carolina complete and absolute authority over how the 1915(b)(c) Waiver programs will be implemented and governed, structurally as well as financially, with virtually no reliable accountability safeguards, I’m not certain that there’s much of a point to appealing directly to the decision-maker – save documentation for federal law suits.

Already, the effects of this transition and the crippling cuts this new Waiver brings are being felt across the state as Case Managers abandon ship for job security and self-preservation, leaving agency professionals and their hefty case loads of clients and families hanging in the balance of uncertainty. Reimbursement rates have been slashed yet again for durable medical supplies, leaving many medical suppliers with their hands tied, unable to fill their clients’ needs. A perfect example being pull-ups for incontinent recipients; reimbursement rates were cut by $.20 per unit leaving the only option as generic unisex pants which do not work at all for children whose bodies are twisted by Spina bifida or even with my own child who is as skinny as a bean and wets through her clothing often 5-7 times a day due to her diabetic thirst and ill-fitting pull-ups. Like many other parents, I’m willing to pay the difference out of pocket to get what works best for my child and makes our life easier, however Medicaid policies, unlike Medicare, do not allow this.

Like most great ideas, there will always be issues to work through and problems that will inevitably arise, but that’s what makes this nation great – we continue to work though issues and solve problems through a system of democracy moving forward for the betterment of all, not selling-out to the most eager government contract bidders with questionable agendas. Sure, we can’t please all of the people all of the time, but in times of crisis, we stand united. –Governor, when we allow the value of human life to be determined by capital gain, when we sacrifice the well-being of the most innocent among us to compensate our own shortcomings, and when we judge the worth of our most fragile, not by their character nor intention, but rather their abilities – we are in crisis.

Our founding fathers entered into a social covenant promulgating that “…all men are created equal, that they are all endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.” That very premise remains the foundation of our country, our society, our constitution, our rights as citizens under the constitution, and even more recent federal statutes such as the Americans with Disabilities and Olmstead Acts, fought tirelessly for generations to assure the necessary protection, supports and thus equality for those abled-differently.

As Governor, you swore an oath to uphold the Constitution and laws of the United States. As the most influential political authority in the State of North Carolina, you hold executive power to veto any legislation you deem harmful to the citizens of the state. You were elected into the office of Governor by people who trusted you to be the leader and voice we so desperately needed and yet, you Governor Perdue, made a conscious decision not to protect our children by allowing North Carolina House Bill 916 to pass June 13^th, 2011. By signing off on this bill, you chose not to set the example and send the message to the rest of North Carolina, and to the rest of the nation, that North Carolina values ALL of its citizens. You chose not to speak up and tell legislature and the world that these precious children, young and old – the most vulnerable citizens of our population, our most meek and kind and trusting special populations – are not for sale when the very survival and quality of our children’s and families’ lives, are put on the chopping block once again to trim the budgetary fat because they are an easy target, the weakest voice of unconditional love, broken dreams, and battle fatigue.

In my life I have learned beyond a shadow of a doubt that special people were not born into this world to be tested, but rather to serve as litmus for the rest of us.

Perhaps you didn’t realize? Perhaps members of the House of Representatives and Senate were not well informed by those weary citizens, their exhausted constituents, who will be most effected? Granted, it is impossible to put a face on every number when you don’t hear their cries in the form of a great roar, when you don’t know intimately their hardships, nor live the pain of their lives just trying to make it through another day.

I’m writing now to give you that face… Her name is Isabel.

I respectfully implore you, beg of you now as the details of NC House Bill 916’s new 1915(b)(c) Waiver plan continues to be worked through, that you please take just a moment, stop… take a deep breath and imagine, just for a brief instance, that you are not Governor, that you’re not an elected official, not a politician, nor even a party affiliate – it’s not that you don’t care what’s going on in the world around you, but your world demands all of your time and energy... Imagine that you’re just an average North Carolinian living paycheck to paycheck trying to be the absolute best parent you can be providing for a child you never anticipated; a child you would give your life for just to hear them speak the words, “I love you.” You juggle all your time between working to provide for your family, feeling guilty over the lack of “normalcy” and opportunity left over for siblings, researching special education law and medical issues, catching up on missed work, catching up on missed life, networking with other parents searching for answers and sharing resources, physically caring for your special child, and fighting for their rights – against the school, against the county, against a library that discriminated against your child, against the state who threatens their very livelihood and quality of existence… You stopped thinking long ago about providing a better life for him or her than you once had; you only want what’s right and just and to not have to wake every single morning wondering that which haunts you to your core, “What would happen to my child if something happened to me?”... Just for a second, please imagine, please consider, what if this were your child?

I often think of that key-note speaker and her story, and still she is right. We do have such a long way to go as a society… No child should ever be thrown away. Please, please help us now.

Let your last decent act as Governor be one of mercy, compassion, and understanding toward the needs and struggles of special populations and their families by encouraging legislature to REPEAL NC House Bill 916 and return to the drawing board. House Bill 916 is NOT the answer!

I respectfully request a written response detailing your current position and intentions regarding this vital matter. I would also like to be kept abreast of any developments and decisions relating to NC HB 916 and 1915(b)(c) Medicaid Waiver plans and decisions and afforded the opportunity to meet and speak as a recipient representative. Thank you in advance.

Once again, I thank you for your time and attention in reading these words that represent the challenges, frustrations, heartache, and desperation of so many North Carolina families. Despite the great length of this letter, I assure you, the paint has barely touched the canvas. Whatever information you need for further reconsideration on this matter, whatever you’d like to see or hear, from whatever county, demographic, parent, or professional, I can and will find it for you. Please do not hesitate to call upon me for assistance or for further discussion.

Help me help you make this right.

Sincerely,

Crystal J. De la Cruz – Hopper

Mother, Advocate, and Concerned NC Citizen

HOPPER LAW FIRM, PLLC

4700 Six Forks Road, Suite 150

Raleigh, North Carolina 27609-5244

email address

Phone: 919-829-5600

Fax: 919-510-5152

Enclosures:

a.     Photo collage of Isabel and her family

b.     “Counting on Me” article written for FPG Child Development Institute, UNC-CH, project magazine, All Together Now, by Crystal J. De la Cruz (as republished in Educating Exceptional Children by Kirk, Gallagher, Coleman, Anastasiow), 11/2003

c.     NC-Support Needs Assessment Profile (SNAP) for Isabel, 02/2012

d.    NC DHHS MR/DD/SAS Person-Centered Profile and Continued Needs Review (CNR) plan for Isabel, 02/2011

e.     NC DHHS MR/DD/SAS CAP / CNR and Medicaid Cost Summary for Isabel, 02/2012

f.   NC DHHS MR/DD/SAS Home & Community-Based Supports Habilitative Technician / CAP Worker time sheets for Isabel’s direct care provider, 07 – 08, 2011

g.     School and Home Daily Activity Sheet recording Isabel’s day, 2012

h.    Daily Diabetic Log recording Isabel’s Blood Glucose levels, Carbohydrate Intake, and daily Insulin corrections, 2012

i.      Wake County Public School System (WCPSS) Physician’s Order and Plan of Treatment, School Based Public Health, 01/2012

j.      WCPSS Individual Education Program (IEP) for Isabel, 02/2012:

                                               i.     DEC-5 / Prior Written Notice of Annual Review and Re-evaluation Determination

                                             ii.     IEP Team Meeting Minutes

                                            iii.     WCPSS DEC-4 / IEP

                                            iv.     WCPSS DEC-7 / Consent for Re-evaluation

                                             v.     WCPSS DEC-2 / Consent for Evaluation / Re-evaluation / Prior Notice

                                            vi.     WCPSS Extended School Year (ESY) Eligibility Worksheet 2

k.     WCPSS “Student Dream Sheet” Assessment form

l.      WCPSS “Things I Am Good At Doing” Assessment form

m.   Isabel’s Wake County Public School System (WCPSS) Report Card / NC Extended Content Standards, 2011-2012

CC:      President Barack Obama

First Lady Michelle Obama

Vice-President Joe Biden

Dr. Jill Biden

Secretary Kathleen Sebelius, US Department of Health and Human Services

Deputy Secretary Bill Corr, US Department of Health and Human Services

Commissioner Sharon Lewis, US HHS, Administration on Developmental Disabilities

Deputy Commissioner Jamie Kendall, US HHS, Administration on Developmental Disabilities

Cindy Mann, JD, Deputy Administrator & Director of State Operations, CMS

Connie Martin, CMS, Division of Medicaid & Children’s Health Operations

US Congressman Brad Miller

US Senator Richard Burr

US Senator Kay Hagen

   

Mr. Al Delia, Acting Secretary, North Carolina Department of Health and Human Services

Dr. Jeffrey P. Engel, State Health Director, North Carolina Department of HHS

Mr. Danny Staley, Deputy Director and Chief Operating Officer, NC Division of Public Health

Representative Grier Martin, D (33) Wake

Senator Neal Hunt, R (11) Wake

Representative Alma Adams, D (58) Guilford

Representative Kelly M. Alexander, Jr., D (107) Mecklenburg

Representative Martha B. Alexander, D (106) Mecklenburg

Representative Marilyn Avila, Joint Caucus Leader, R (40) Wake

Representative Larry M. Bell, D (21) Sampson, Wayne

Representative Hugh Blackwell, R (86) Burke

Representative John M. Blust, R (62) Guilford

Representative James L. Boles, Jr., R (52) Moore

Representative Alice L. Bordsen, D (63) Alamance

Representative Glen Bradley, R (49) Franklin, Halifax, Nash

Representative Marcus Brandon, D (60) Guilford

Representative William Brawley, R (103) Mecklenburg

Representative William D. Brisson, D (22) Bladen, Cumberland

Representative Larry R. Brown, R (73) Davidson, Forsyth

Representative Rayne Brown, R (81) Davidson

Representative Harold J. Brubaker, R (78) Randolph

Representative Angela R. Bryant, D (7) Halifax, Nash

Representative Justin P. Burr, R (67) Montgomery, Stanly, Union

Representative Becky Carney, D (102) Mecklenburg

Representative George G. Cleveland, R (14) Onslow

Representative Jeff Collins, R (25) Nash

Representative Bill Cook, R (6) Beaufort, Pitt

Representative Tricia Ann Cotham, D (100) Mecklenburg

Representative James W. Crawford, Jr., (32) Granville, Vance

Representative William A. Current, Sr., R (109) Gaston

Representative N. Leo Daughtry, R (26) Johnston

Representative Jimmy Dixon, R (4) Duplin, Onslow

Representative Jerry C. Dockham, R (80) Davidson

Representative Nelson Dollar, R (36) Wake

Representative Beverly M. Earle, D (101) Mecklenburg

Representative John Faircloth, R (61) Guilford

Representative Bill Faison, D (50) Caswell, Orange

Representative Jean Farmer-Butterfield, D (24) Edgecombe, Wilson

Representative Susan C. Fisher, D (114) Buncombe

Representative Elmer Floyd, D (43) Cumberland

Representative Dale R. Folwell, R (74) Forsyth

Representative Phillip Frye, R (84) Avery, Caldwell, Mitchell, Yancey

Representative Rosa U. Gill, D (33) Wake

Representative Mitch Gillespie, R (85) Burke, McDowell

Representative Rick Glazier, D (45) Cumberland

Representative Ken Goodman, D (66) Montgomery, Richmond

Representative Charles Graham, D (47) Robeson

Representative Joe Hackney, D (54) Chatham, Moore, Orange

Representative Mike Hager, R (112) Cleveland, Rutherford

Representative R. Phillip Haire, D (119) Haywood, Jackson, Macon, Swain

Representative Larry D. Hall, D (29) Durham

Representative Susi H. Hamilton, D (18) New Hanover

Representative Pricey Harrison, D (57) Guilford

Representative Kelly E. Hastings, R (110) Cleveland, Gaston

Representative Dewey L. Hill, D (20) Brunswick, Columbus

Representative Mark K. Hilton, R (96) Catawba

Representative Mark W. Hollo, R (88) Alexander, Catawba

Representative Bryan R. Holloway, R (91) Rockingham, Stokes

Representative D. Craig Horn, R (68) Union

Representative Julia C. Howard, R (79) Davie, Iredell

Representative Pat B. Hurley, R (70) Randolph

Representative Frank Iler, R (17) Brunswick

Representative Dan W. Ingle, R  (64) Alamance

Representative Verla Insko, D (56) Orange

Representative Darren G. Jackson, D (39) Wake

Representative Maggie Jeffus, D (59) Guilford

Representative Linda P. Johnson, R (83) Cabarrus

Representative Bert Jones, R (65) Rockingham

Representative Jonathan C. Jordan, R (93) Ashe, Watauga

Representative Carolyn H. Justice, R (16) New Hanover, Pender

Representative Patsy Keever, D (115) Buncombe

Representative Ric Killian, R (105) Mecklenburg

Representative James H. Langdon, Jr., R (28) Johnston, Sampson

Representative Stephen A. LaRoque, R (10) Greene, Lenoir, Wayne

Representative David R. Lewis, R (53) Harnett

Representative Marvin W. Lucas, D (42) Cumberland

Representative Paul Luebke, D (30) Durham

Representative Daniel F. McComas, R (19) New Hanover

Representative Darrell G. McCormick, R (92) Iredell, Surry, Yadkin

Representative Pat McElraft, R (13) Carteret, Jones

Representative Wm. C. "Bill" McGee, R (75) Forsyth

Representative Chuck McGrady, R (117) Henderson

Representative Frank McGuirt, D (69) Anson, Union

Representative Marian N. McLawhorn, D (9) Pitt

Representative Henry M. Michaux, Jr., D (31) Durham

Representative Grey Mills, R (95) Iredell

Representative Annie W. Mobley, D (5) Bertie, Gates, Hertford, Perquimans

Representative Tim D. Moffitt, R (116) Buncombe

Representative Rodney W. Moore, D (99) Mecklenburg

Representative Tim Moore, R (111) Cleveland

Representative Tom Murry, R (41) Wake

Representative Bill Owens, D (1) Camden, Currituck, Pasquotank, Tyrrell

Representative Diane Parfitt, D (44) Cumberland

Representative Earline W. Parmon, D (72) Forsyth

Representative Garland E. Pierce, D (48) Hoke, Robeson, Scotland

Representative Larry G. Pittman, R (82) Cabarrus

Representative G. L. Pridgen, R (46) Hoke, Robeson, Scotland

Representative Shirley B. Randleman, R (94) Wilkes

Representative Ray Rapp, D (118) Haywood, Madison, Yancey

Representative Deborah K. Ross, D (38) Wake

Representative Efton M. Sager, R (11) Wayne

Representative Jason Saine, R (97) Lincoln

Representative Ruth Samuelson, R (104) Mecklenburg

Representative Norman W. Sanderson, R (3) Craven, Pamlico

Representative Mitchell S. Setzer, R (89) Catawba, Iredell

Representative Phil R. Shepard, R (15) Onslow

Representative Timothy L. Spear, D (2) Chowan, Dare, Hyde, Washington

Representative Paul Stam, R (37) Wake

Representative Edgar V. Starnes, R (87) Caldwell

Representative Fred F. Steen, II, R (76) Rowan

Representative Sarah Stevens, R (90) Alleghany, Surry

Representative Mike C. Stone, R (51) Harnett, Lee

Representative Thom Tillis, Speaker of the House, R (98) Mecklenburg

Representative Joe P. Tolson, D (23) Edgecombe, Wilson

Representative John A. Torbett, R (108) Gaston

Representative William L. Wainwright,D (12) Craven, Lenoir

Representative Trudi Walend, R (113) Henderson, Polk, Transylvania

Representative Edith D. Warren, D (8) Martin, Pitt

Representative Harry Warren, R (77) Rowan

Representative Jennifer Weiss, D (35) Wake

Representative Roger West, R (120) Cherokee, Clay, Graham, Macon

Representative W. A. (Winkie) Wilkins, D (55) Durham, Person

Representative Larry Womble, D (71) Forsyth

Representative Michael H. Wray, D (27) Northampton, Vance, Warren

Senator Phil Berger, R, President Pro Tempore, North Carolina Senate

Senator Austin M. Allran, R (42) Catawba, Iredell

Senator Tom Apodaca, R (48) Buncombe, Henderson, Polk

Senator Bob Atwater, D (18) Chatham, Durham, Lee

Senator Doug Berger, D (7) Franklin, Granville, Vance, Warren

Senator Phil Berger, R (26) Guilford, Rockingham

Senator Stan Bingham, R (33) Davidson, Guilford

Senator Harris Blake, R (22) Harnett, Moore

Senator Dan Blue, D (14) Wake

Senator Andrew C. Brock, R (34) Davie, Rowan

Senator Harry Brown, R (6) Jones, Onslow

Senator Peter S. Brunstetter, R (31) Forsyth

Senator Chris Carney, R (41) Gaston, Iredell, Lincoln

Senator Debbie A. Clary, R (46) Cleveland, Rutherford

Senator Daniel G. Clodfelter, D (37) Mecklenburg

Senator Warren Daniel, R (44) Burke, Caldwell

Senator Charlie Smith, D (38) Dannelly Mecklenburg

Senator Jim Davis, R (50) Cherokee, Clay, Graham, Haywood, Jackson, Macon, Swain, Transylvania

Senator Don East, R (30) Alleghany, Stokes, Surry, Yadkin

Senator Linda Garrou, D (32) Forsyth

Senator Thom Goolsby, R (9) New Hanover

Senator Malcolm, D (40) Graham Mecklenburg

Senator Rick Gunn, R (24) Alamance, Caswell

Senator Kathy Harrington, R (43) Gaston

Senator Fletcher L. Hartsell, Jr., R (36) Cabarrus, Iredell

Senator Ralph Hise, R (47) Avery, Haywood, Madison, McDowell, Mitchell, Yancey

Senator Brent Jackson, R (10) Duplin, Lenoir, Sampson

Senator Clark Jenkins, D (3) Edgecombe, Martin, Pitt

Senator Ed Jones, D (4) Bertie, Chowan, Gates, Halifax, Hertford, Northampton, Perquimans

Senator Eleanor, D (23) Kinnaird Orange, Person

Senator Eric Mansfield, D (21) Cumberland

Senator Floyd B. McKissick, Jr., D (20) Durham

Senator Wesley Meredith, R (19) Bladen, Cumberland

Senator Martin L. Nesbitt, Jr., D (49) Buncombe

Senator E. S. (Buck) Newton, R (11) Nash, Wilson

Senator Louis Pate, R (5) Greene, Pitt, Wayne

Senator Jean Preston. R (2) Carteret, Craven, Pamlico

Senator William R. Purcell, D (25) Anson, Richmond, Scotland, Stanly

Senator Bill Rabon, R (8) Brunswick, Columbus, Pender

Senator Gladys A. Robinson, D (28) Guilford

Senator David Rouzer, R (12) Johnston, Wayne

Senator Bob Rucho, R (39) Mecklenburg

Senator Dan Soucek, R (45) Alexander, Ashe, Watauga, Wilkes

Senator Josh Stein, D (16) Wake

Senator Richard Stevens, R (17) Wake

Senator Jerry W. Tillman, R (29) Montgomery, Randolph

Senator Tommy Tucker, R (35) Mecklenburg, Union

Senator Don Vaughan, D (27) Guilford

Senator Michael P. Walters, D (13) Hoke, Robeson

Senator Stan White, D (1) Beaufort, Camden, Currituck, Dare, Hyde, Pasquotank, Tyrrell, Washington

Keep your paws crossed!

How to Advocate

Advocacy for Special Populations

First, please know that I am not an expert, on anything. I am just a special parent who happens to work in a law firm and have spent 14 years (7 of those as a single parent) learning the ropes of the disability world, connecting with people who know more than me, and fighting for the rights and services of my child, often the hard way. I also happen to be rather handy at research and word-smithing and yes, that helps, but each of us have a voice to be heard, so I'm happy to share what I know and what has worked for me in hopes that your fight is a little easier.

I know how incredibly overwhelming it can be finding the way through confusing systems of continually changing bureaucracy and trying to understand enough to even articulate an intelligible argument or even find the time to do so in between work, IEP meetings, doctors / specialist / therapy appointments, etc. and caring for high maintenance children while juggling all that daily life throws our way. I totally get it. You're tired. I'm tired. And perhaps that's what they are counting on, or perhaps they just don't know the realism of this new Medicaid Waiver plan on the families being served because they lack feedback? Either way, I firmly believe that if there were ever another Ice Age to strike while humans roamed the earth, it would be the special parents that would be left standing... Yes, we are that strong.

Simple Strategies

• Document EVERYTHING. - I cannot stress this enough. Document anything and everything regarding services, care, concerns, events, and conversations you have. Each and every time you speak with someone, regardless of the issue, if it involves your child make a note of who you spoke with, time and date, and a note about your conversation. If you speak with someone, follow up with an email thanking them for their time and outline the conversation as you understood it. And keep every email.
• File an Appeal. - If you have not already done so, and have had or will soon be having your Continued Needs Review (CNR) of your child's CAP plan with your case manager, ask for an appeal regarding service hours. If you do not have a trustworthy advocate in your case manager, INSIST upon an appeal. It is your right as a parent.
• Note: NC DHHS is required to submit regular reports to General Assembly subcommittees on numbers of state-wide appeals; this is one way their position is justified - people are not fighting it and not providing feedback.
• Kill 'em with Kindness (or at least professionalism!) - You know the old adage "you'll get more flies with honey than vinegar"? Well, it's true. But the more emotional the issue, the more difficult it is to hold your tongue and keep your cool (which is why I write first!) though channeling animosity at those in a position to ultimately help grant your wish will only discredit you and cause you not to be taken seriously. So, keep every encounter respectful and tactful. If this is difficult, consider writing a letter - and then let someone else read it who is not as emotionally invested and who can provide objective feedback.
• Ask Questions. - Ask your provider, ask your case manager, ask your provider agency, ask your local non-profit advocacy groups, ask The Arc of NC or your local Arc chapter, friends and fellow parents, and anyone who can provide you with tidbits of information.
• Take Notes. - Jot down information or even questions you feel are important that align with your concerns. Record names, organizations, and offices that you've been given and keep up with your contacts.
• Research and Read. - Google is a wonderful thing! 
• An "advanced search," for instance, will allow you to search specifically for .pdfs if you're looking for documents (even the ones that aren't where they used to be).
• Learn how to navigate to NC General Assembly website - anything that happens in court or legislature is a matter of public record; it's just a matter of knowing where to look. 
• Most organizations and members of legislature have websites and there's a lot of good information on them.
• Ask More Questions & Take More Notes. - Ask questions about the stuff you've found and read. Ask others about information you've received.
• Strength in Numbers. - Unite with other parents, professionals, care-givers, providers, anyone who shares your concerns and can relay those concerns in a diplomatic manner; we've spent our children's lives networking for answers.
• Connect with people you know to be strong and effective advocates, those who represent themselves diplomatically and professionally. Again, channeling the best of intentions through anger and aggression will only undermine your position and cause; likewise, joining forces with someone who advocates in this way, will discredit you as well and cause your message not to be taken seriously.

Making Contact in Writing

Writing a letter expressing your concerns is one of the the best ways to take action again the effects of HB 916. It doesn't matter if you fully understand the law or the dynamics behind the financial agenda. It doesn't matter if you're not a good writer. The point is that you express yourself and make it real for those basing their legislative actions on the statistics and figures given to them.

• Find Your Representatives. - See Speak Up!
• Know Your Target. - Take the time to read up on the people you are writing personal letters to. Appeal to their stated concerns by relating their key issues to the effects of service loss on your child and your family's lives.
• Meet the "Gate-keepers." - Call the offices of the people you intend to connect with and get to know the person on the phone or the person assigned to the area of your concern and who will receive your email first or open your mail. Be nice and build a rapport - this person can help you!
• Write. 
• Refer to your notes.
• Write one glorious heartfelt script to Governor Perdue and 'Carbon Copy' (CC) all the rest.
• If you are a business owner, are part of a family business, or have a supportive and understanding boss (who gives you permission), write your letter on your business letterhead. Elected officials bank on financial support from local business owners.
• Consider brief personal enclosure letters to key people (see Speak Up! for details and contact information): 
• your direct voting representatives
• House Speaker Thom Tillis
• House Majority Leader Paul Stam
• Joint Caucus Leader Marilyn Avila
• Representative Nelson Dollar
• our US Senators for NC
• Representative Justin P. Burr
• Representative William A. Current, Sr.
• Contact the Centers for Medicare and Medicaid Services (CMS):
• Center for Medicare and Medicaid Services
  Cindy Mann, JD, Deputy Administrator / Director of State Operations
  Center for Medicaid and CHIP Services (CMCS)
  Centers for Medicare and Medicaid Services
  Phone: (202) 690-7428 (DC) or (410) 786-3871 (Baltimore) 
  Email: Cynthia.Mann@cms.hhs.gov    
• Centers for Medicare and Medicaid Services
  Division of Medicaid and Children’s Health Operations
  Attn: Connie Martin, Waiver Analyst for NC
  61 Forsyth Street, Suite 4T-20
  Atlanta, Georgia 30303 
  Phone: (404) 562-7412
  Email: Connie.Martin@cms.hhs.gov 
• Always, Always be Professional.
• Make it Personal. 
• Tell them your story.
• Tell them about your child.
• Tell them about what a typical day is like caring for your child.
• Tell them about the supports and services you receive for your child and how a decrease in those supports and services will affect your child's life and that of your family; tell them what your supports and services mean to you.
• Tell them how you are supported by your case manager and what that personal relationship means; how that simply cannot be replaced by central call center of strangers they plan to implement.
• Include a photo of your child who receives Medicaid Waiver benefits; either a snapshot or embed a photo in your own custom letterhead. They need to see the faces of our children!
• Ask for What You Want.
• Ask for the action you would like to see - even if you know it's likely to happen. Tell them anyway.
• Ask for a written response to your concerns stating their current position on the HB 916 matter and their intentions.
• Ask to be kept informed.
• Carbon Copy (CC). - At the bottom on your letter, after your signature and list of any enclosures, include a CC (carbon copy) list of those you intend to send a copy to from your local representatives to federal agencies to advocacy groups etc.
• Suggestions of folks to CC:
• On correspondence to members of the NC General Assembly, CC  Consultant, Dr. Patricia Porter.
• CC US Health and Human Services.
• CC Centers for Medicare and Medicaid Services (CMS).
• CC US Administration on Developmental Disabilities (ADD).
• CC NC Department of Health and Human Services (DHHS).
• CC Disability Rights NC Director, Vicki Smith.
• Note: If you are sending a blanket email to all Members of the NC House and Senate, I recommend utilizing the BCC (blind carbon copy) for all members of the legislature (BCC prevents the recipients from seeing who else is included in the BCC). But DO list any other agencies and officials as CC so that they are known (i.e. US HHS, US CMA, US ADD, etc.) and be sure to acknowledge each party and / or organization in your greeting appropriately with their titles...
•  Example: "Dear Governor Perdue, Secretary Sebelius, Commissioner Lewis, Deputy Administrator and Director Mann, US Senator Burr, US Senator Hagan, and Members of the North Carolina House of Representatives and North Carolina Senate:"
•  Again, please see Speak Up! for more information and contact information.
• Copy and Scan!  
• If you don't have a printer or cannot make 200 copies, and would like to send (or deliver in person!) hard copies, call or go by a local copy center such Office Depot or a UPS franchise, and inquire about discount copies for a disability cause; some folks do have a heart! OR...
• Scan you letter in its entirety with enclosures into a digital .pdf and forward via email to all the rest. Don't forget to request a "return receipt" if your mail client permits.
• Send! - Email, fax, snail-mail, hand write it if you have to.
• Follow Up. - After one week, if you have received no acknowledgment, call or email the 'gatekeeper' you made contact with and confirm receipt of your correspondence. Ask when you can expect a response - and document it.
• Be the Squeaky Wheel. - Week two: call / email again. Ask again, politely.
• Make an Appointment with Your Representatives. - If you live in the greater Triangle area and are able to travel, or if your local representatives have and office near you, make an appointment to talk to them about your concerns. If you're able, bring your child with you (and someone to care for him or her while you meet) and make an introduction. If travel is not an option, make an appointment for a telephone conference to speak to them personally.

... more to come ...