ASNC Day on the Hill

 

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This article was contributed by Jennifer Mahan, Director of Advocacy and Public Policy.

The Autism Society of North Carolina traveled to Washington, D.C., to participate in the Autism Society of America’s annual Day on the Hill for Autism Society advocates. Our goal in participating this year was to make sure that we voiced to Congress the critical need for services and supports for people of all ages on the autism spectrum, as legislators consider affordable health care access, Medicaid funding, and education issues.

ASNC Director of Policy Jennifer Mahan met with staff from our congressional delegation on Capitol Hill February 16 to discuss our concerns about affordable, comprehensive health care; Medicaid’s importance to people with disabling conditions; the need for adult services including employment supports and housing; and the right to a free appropriate education that meets the needs of students with disabilities.

Many of our current members of Congress are aware of autism issues, as well as the work of ASNC, based on their connections to constituents, families and ASNC’s long history of service in NC. Despite this familiarity, with so many changes happening on a national level it is more important than ever for all of us to make the connection between the policy decisions faced by our members of Congress and the impact of those decisions on the lives of people with autism and their families.

 

What You Can Do

  1. Learn who represents you and North Carolina in Congress.
    • You are represented by two US senators, Richard Burr and Thom Tillis.
    • You are represented by one member of the US House of Representatives, based on where you live. You can find out which US House member represents you by entering your street address on the THIRD map at the bottom of this page. (Please note that only the third map on this page is for Congress. The other maps are for the NC General Assembly.) Or you can call the Congressional Switchboard at 202-224-312 for info on your members of Congress.
  2. Tell your representatives about your experiences with autism, as a person on the spectrum, as a family member, as a professional, as someone who cares:
    • Call or email. Handwritten letters take weeks or months to reach Congress because of security measures. Calling or emailing is better. Better still is inviting your member of Congress to a local autism event or local service organization to see things firsthand.
    • Say you live in their district. (OR for your two senators, say that you live in NC).
    • Tell them the basics: who you are, how autism has affected you, why the issue is important, and why retaining or getting access to health care and education services has helped. Keep it to the equivalent of a page or a five-minute conversation. Short summaries are more likely to generate questions and interest in your issue.
    • Be respectful and positive, but firm. Ask for what you need. Some talking points are below. See our toolkit Advocacy 101 for more on working with elected officials.

 

Talking Points to Advocate on Issues that Matter

We know that health and disability issues can be complex. Below are some points that you can use in your discussions with Congress. MOST IMPORTANT is telling your story about autism and what is working or what could be improved with the help of your member of Congress. You don’t need to be a policy expert!

  1. The Affordable Care Act/“Obamacare”
    • The ACA should not be repealed without a plan for replacement that maintains or improves access to health care.
    • People with autism have benefited from parts of the ACA that require coverage for pre-existing conditions, the ability to stay on families’ health-care insurance until the age of 26, and the ability to buy affordable coverage on the health marketplace.
    • Autism is a complex disorder that often includes other physical and neurological conditions.
    • Any health-care package must include both rehabilitative AND habilitative services, mental health and addiction services coverage, behavior treatment, and prescription drug coverage.
    • Because of changes in the ACA, North Carolina has dramatically improved access to children’s health care, which improves access to developmental screening, early identification of autism, and early interventions.
    • Health care must be affordable and address high cost-sharing requirements and high premiums. Many families already struggle with added costs of raising a child with special health needs. Many adults on the spectrum are unemployed or under-employed, so age cannot be the only factor in determining health-care subsidies.
  2. Medicaid
    • Medicaid provides health-care services, long-term care services, and other supports that maintain health, functioning independence, safety and well-being to an estimated 500,000 children and adults with disabilities in North Carolina.
    • State Medicaid programs provide critical screening, early intervention, and home-based health programs for children with autism under Early and Periodic Screening, Diagnostic and Treatment (EPSDT). Early screening, diagnosis, and intervention are critical to preventing long-term disability.
    • NC is already doing a good job with its federal Medicaid funds: NC has used managed-care principles, prevention services, and health data to effectively manage Medicaid costs.
    • Do not cut Medicaid funding. Program cuts, along with block granting or per capita caps would hurt people with autism who rely on Medicaid for essential services. These costs get passed along to beneficiaries, families, and providers who are already doing more with less.
    • Additional cuts or restrictions on Medicaid funding could prevent NC from addressing the 12,000 people with developmental disabilities, including autism, on NC’s Medicaid waiver waiting list.
  3. Education
    • The Individuals with Disabilities Act (IDEA) and the Every Student Succeeds Act (ESSA) ensure that students with disabilities get the education they need and that schools are subject to a strong accountability system to ensure all students succeed.
    • IDEA is parent-driven: parents ask for evaluations, participate in planning, and can access procedural protections to ensure that their child is able to learn.
    • The federal IDEA act is not perfect, but it is assuring families that their child is able to attend school and get access to the curriculum in the least restrictive environment. It is CRITICALLY important to assure these rights for students with disabilities.
    • Schools are already challenged to meet the needs of students with disabilities: right now only about 15% of the funding for educating special needs students comes from the federal government though much more was promised. Please fully fund special education.

 

If you have questions about policy issues, please contact Jennifer Mahan, ASNC Director of Advocacy and Public Policy, at jmahan@autismsociety-nc.org or 919-865-5068.

 

 

 

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Looking for a Place to Belong? Join an ASNC Chapter

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Pender County Chapter

Fall is a great time to join one of the Autism Society of North Carolina’s 50 Chapters and Support Groups around the state. The beginning of the new school year also marks the restart of the groups’ activities and events.

ASNC’s Chapters and Support Groups are led by generous parents or family member volunteers who join together with other concerned individuals to create a welcoming and inclusive community of support for individuals with autism and their families. “So many of our members tell us how happy they are to finally have somewhere to turn and how good it feels to not feel alone,” said Amy Irvin, mom and a member of the leadership team for the Sampson County Chapter.

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Robeson County Chapter

Emily Green, a member of the Forsyth County Chapter said, “I consider these people my truest friends. I can trust them to watch (and understand) my kids or ask them for information about services, extracurricular activities, or medical advice. I love being part of such a supportive and accepting group of people that always have an answer, a suggestion, or know where to point you to help find one.”

If you live in one of the following areas, you can take part in one of our new or revitalized Chapters and Support Groups: Caldwell County, Halifax County, the High Country (Ashe, Alleghany, Watauga and Wilkes counties), Lee County, Macon County, Rowan County, Wayne County, or Wilson County.

Kristi Ford, Leader of the new Lee County Support Group, said the group has been planning meet-up events and playdates to get together regularly. “For this year, I’m most excited about seeing us mold together as a group, see friendships form, and for our children to become playmates,” she said. “Living a life of autism can be isolating for the whole family, so I hope we can reach families in our area to let them know that there are others walking the same journey and we can all have fun together.”

Jennifer Clapton, leader of the Halifax County Support Group, said, “We are excited about growing as a new chapter and increasing parent involvement. We also are very interested in offering ongoing social outings for our kids.”

Malinda Pennington said the Wilson County Chapter is excited about its second year. “We want to be able to support the unique needs of every family such as those with girls on the spectrum, young children school-age children, and adolescent/ adults with autism.”

No matter where you are, click here to find a group near you, or check out our online calendar to see events.

 

Share Your Public Policy Priorities

 

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This article was contributed by Jennifer Mahan, Director of Advocacy and Public Policy at ASNC.

The Autism Society of North Carolina advocates with policymakers at the General Assembly, state departments and divisions, and LME/MCOs to help create better services and opportunities for people on the autism spectrum. We are developing our public policy targets for the two-year legislative cycle that begins in January 2017.

Please help us by taking this quick survey, which asks you to prioritize potential public policy targets for the next two years:

https://www.surveymonkey.com/r/HYCB3G3

ASNC is committed to working with policymakers to expand access to services and supports, expand access to health care, improve education for children and young adults, expand access to employment, improve services infrastructure, and ensure that people on the spectrum are able to exercise their rights and live in a just world. Given the MANY needs for public policy advocacy across all of these issues and the limited resources with which to advocate, ASNC must focus on a select number of policy issues as we move forward.

Whether you are an individual on the spectrum, a family member, friend, professional, or other person who cares about people with autism, we want to know what you think. You are a person for whom we advocate, so your input into our public policy targets is crucial. And yes, choosing which issues are most important to you among the many important issues is difficult. We recognize that difficulty and appreciate your willingness to help us make the tough choices.  Our final public policy targets will be released in January 2017.

If you have questions about North Carolina policy issues, please contact Jennifer Mahan, ASNC Director of Advocacy and Public Policy at jmahan@autismsociety-nc.org or 919-865-5068.

Recognize Your ASNC Direct Support Professional

Direct Support Professional: a formal name that doesn’t evoke the dedication and love that our hundreds of staff members show every day. Direct Support Professionals (DSPs) carry many more titles; they are Community Skills Instructors, Employment Supports Instructors, General Instructors, Residential Instructors, Camp Counselors, and more. But even these names do not tell the true story of the critical support they provide.

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Tyler and his DSP, Carey Bowman of ASNC

Every day, DSPs work one-to-one with individuals with autism, teaching skill acquisition and supporting them in reaching their goals. They become trusted friends, natural supports, and honorary members of families. They are the backbone of our organization.

We value and respect DSPs every day, but each year we truly celebrate them during Direct Support Professional Recognition Week in September, this year the 11th through 17th. During that week, stay tuned to our social media to hear stories of the impact these caring and talented folks are making in lives across NC.

Each September, we also accept nominations for the John and Claudia Roman Direct Service Award. The annual award was endowed by Lori and Gregg Ireland to honor Christine Roman, the ASNC Direct Service Professional who worked with their son, Vinnie. It was named for her parents, John and Claudia Roman. Families who have a DSP from the Autism Society of North Carolina may obtain a nomination for this award by emailing Kathy Cockrell. Nominations will be accepted through Sept. 30.

Last year’s winner of the Roman Award was Clary Lamberton of Asheville. In previous years, we have honored Melissa Mulcahey (2014), Allen Cohen (2013), Tanya Ahner-Mejia (2012), Lori Sweeney (2011), and Emily Bennett (2010) with this award for their tireless dedication, their ability to go above and beyond, and making a real impact in the lives of individuals with ASD and their communities.

Listen to what some parents have said about their DSPs:

“It’s because of people like her that our kids are loved and accepted and our families are comforted.”

“Rather than just stick him in a job, check him off the list and move on, he considered what would be best for Alex in the long run.”

“Her calm approach has been so valuable in helping my son self-regulate.”

“She has tirelessly worked to ensure that he enjoys life to the fullest.”

The Autism Society of North Carolina employs hundreds of direct support professionals; without their dedication and continued efforts, many individuals on the autism spectrum and their families would not have needed support services. Some come to work for ASNC for a few months, others stay for a lifetime.

DSPs are the largest percentage of ASNC’s employees, and we learn how to improve what we do as an organization and as a system from them. Many full-time ASNC employees and managers got their start in the field through direct support work. Because of this understanding throughout the organization of the importance of DSPs, our ultimate hope is that the life of an individual with autism is improved in some way through their work.

We invite you to give your DSP a pat on the back, nominate them for the Roman Award, or make a donation in their honor for a job well done during Direct Support Professional Recognition Week (or any week).

Run/Walk for Autism: A Day “I Can Just Be Me!”

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Two years ago at the 2014 Triangle Run/Walk for Autism, 7-year-old Abigail was in tears after crossing the finish line. She told her worried mother that she was sad because she didn’t win the race. Abigail’s parents explained to her that finishing first was not their goal.

The little girl with autism took the lesson to heart before the 2015 race. “She surprised me last year when we crossed the finish and she exclaimed how happy she was,” said her mother, Emily Hamilton. “She said that we are winners in this race because we can make people’s lives better.”

teamThe Hamilton family has indeed been making people’s lives better, raising more than $2,000 in the Autism Society of North Carolina’s biggest fundraiser of the year with their team, Piece, Love and Abigail. (The team’s name is a play on the puzzle piece that often represents autism, but they also have fun by sporting tie-dye and other hippie-themed attire, Emily said.)

But to the Hamiltons, the Triangle Run/Walk for Autism is much more than a fundraiser. “It gives us a chance to be with so many others on the spectrum,” Emily said. “It is a whole day where you know there will be no judgment, just understanding. It gives all of us a chance to see representation of the entire spectrum and socialize with families just like us.

“Abigail says it is a day ‘I can just be me!’”

Unfortunately, Abigail has not always had that opportunity. Her parents noticed she was different from other kids her age when she was as young as 1 and wasn’t meeting developmental milestones, but their pediatrician advised them that she would catch up. By the time Abigail was 3, the gap was widening between her and her day-care classmates. She behaved aggressively and was sensitive to sounds, lights, and other sensations.

“She was socially withdrawn and was struggling in almost every task asked of her,” Emily said. “Her behavior seemed to be reflecting all of the inner turmoil she was dealing with. We were at a loss.”

When she was 4, Abigail was diagnosed with Autism Spectrum Disorder, ADHD, and auditory processing disorder at UNC Hospital. Emily said their family and friends were surprised by the diagnoses. “Many people said things such as ‘But she’s a girl, they don’t have autism.’ Others said, ‘But she looks so normal.’”

Emily said this lack of understanding is another reason the family supports the Autism Society of North Carolina. This year, the family from Creedmoor started fundraising for their team early as part of Autism Awareness Month in April, and they made bracelets, lanyards, watchbands, and other items to reward those who donated. Abigail has enjoyed helping to make the bracelets, practicing her fine-motor skills, and interacting with donors, practicing her social skills. “So in a way, although we are helping the efforts of ASNC, the fundraising activities have actually helped her,” Emily said. “We have also found this to be a super way for us to have some mother-daughter time, which is so special to me!”

abby2.jpgAbigail is now 9 and is much more successful in school. She has received speech and occupational therapy for the past three years, and her mother has relied on resources from the Autism Society of North Carolina. “I found that the information provided by ASNC was very helpful in teaching myself and others about autism and was crucial in helping Abigail at school,” Emily said. “The IEP and services information proved to be invaluable as she progressed in school. We were able to utilize many of the tools and recommendations to formulate a plan that worked at school as well as home.”

Abigail has also benefited from her service dog, a French Briard that was trained by a local group, Ry-Con Service Dogs. “Prior to getting Samson, Abby suffered from some pretty severe social anxiety. She was unable to go into public places such as restaurants and grocery stores due to sensory overload and anxiety,” Emily said. “Since Samson came along, that has all but subsided. She loves introducing Samson to people that she meets, and he keeps her calm even in the most stressful of situations.”

Samson will be by Abigail’s side at the Triangle Run/Walk for Autism, but it is not one of those stressful situations. On Oct. 8, Abigail will proudly lead her team of family and friends through downtown Raleigh, making sure to spread her message. “I’m just like everybody else, but at the same time I like being different!”

 

Step out to improve lives in the Triangle Run/Walk for Autism on Saturday, Oct. 8! The event in downtown Raleigh will include a USATF-certified 5K race, which is part of the Second Empire Grand-Prix Series; a 5K noncompetitive run; a recreational 1-mile run/walk; and a kids’ dash. Celebrate autism awareness and acceptance with a kids’ play area, music, refreshments, and vendor space that will showcase local businesses, service providers, support resources, and sponsors. Proceeds will fund local programs of the Autism Society of North Carolina.

Register today: www.trianglerunwalkforautism.com

Gavin’s Gang Walks for Resources and Awareness

 

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Gavin Beale didn’t say his first word and screamed in frustration until after his third birthday. From the time he was about 10 months old, his parents, Jenny and Jason Beale of Greensboro, were very concerned about him.

“It was a very dark time because we didn’t know what was going on with him,” said his mother, Jenny. “I knew in my heart of hearts that something wasn’t quite right.”

GavinGavin didn’t enjoy books or do many of the things his older brother, Owen, had done at the same age. When he was 2, the family was told that he might have autism, but he was not diagnosed until later, when he had some language and was fully assessed by Guilford County staff. In the meantime, he had rigorous speech therapy and special education teachers who came to his preschool almost every day to work with him.

Beale said the family had not been public about what they were going through with Gavin during his first couple of years. Once they got the diagnosis in spring 2014, she was ready to share their story. They formed a team for the Greensboro Run/Walk for Autism, the Autism Society of North Carolina’s annual fundraiser. She sent an email out about Gavin with a link to the page for their team, Gavin’s Gang.

The family was overwhelmed by the support of their friends, family, and community, including their home church, Guilford Park Presbyterian. “It’s a testament to Gavin, really. He’s a bright light,” she said. “It’s just a testament to how much people love him.”

In the team’s first year, the family raised almost $3,000 and in the second, their total was $3,075! The team was among the top three fundraisers for the Greensboro Run/Walk for Autism. “When we formed the team, I didn’t really expect that,” Beale said. “The power of social media is amazing!

“The nice thing about the race is that family and friends don’t have to live in Greensboro to support it,” said Beale, adding that they usually have 15-20 people who do the Run/Walk with them, but many more support the team with donations.

Now Gavin is almost 6, and “he has really blossomed,” Beale said. He has a wonderful sense of humor and is very expressive through art and music. He loves going to school but does need help with transitions and social situations. “I love how he thinks of things outside the box,” his mother said. “His perspective is so different. It’s just amazing the way his brain works.”

Gavin plays with LEGOs for hours. “We always say that he’s going to be an engineer,” Beale said. “He’s definitely a builder.”

Beale said they feel fortunate that Gavin is doing so well and want to help other families who might not know about resources that are available from the Autism Society of North Carolina, which improves the lives of individuals with autism, supports their families, and educates communities. “I just know that there are so many people that aren’t as lucky as we are. It feels good to do something.”

She also hopes that their efforts help support autism awareness in the community. Many people tell her that Gavin “doesn’t look like he has autism” or exhibit what they consider to be the usual characteristics. These misconceptions mean they may not understand what his true challenges are, she said, bringing up her concerns about how he will do with social situations in kindergarten this fall.

But one day she is not worried about is Sept. 24, when her family will be out at UNC-Greensboro for the Run/Walk for Autism. She knows that her family will be among a community of people who care and understand that day. “All these folks are experiencing on some level what we are going through.”

 

Step out to improve lives in the Greensboro Run/Walk for Autism on Saturday, Sept. 24! The event at UNC-Greensboro will include a 5K race and a recreational 1K run/walk. Celebrate autism awareness and acceptance with music, refreshments, and vendor space that will showcase local businesses, service providers, support resources, and sponsors. Proceeds will fund local programs of the Autism Society of North Carolina.

Register today: www.greensbororunwalkforautism.com

 

 

2016 Legislative Wrap-Up: Other Highlights

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This article was contributed by Jennifer Mahan, Director of Advocacy and Public Policy at ASNC. It is the third of three parts wrapping up the NC General Assembly’s 2016 short session.

IDD Caucus: Establishment of a bipartisan, bicameral IDD caucus: North Carolina is the fourth state in the United States to have an officially established intellectual and/or developmental disability caucus in both the NC House and the NC Senate. A caucus is a legislative group that comes together to focus efforts on a particular issue, in this case, to research, better understand, and advocate for legislation to address the needs of people with IDD. The IDD caucus is bi-partisan, includes both House and Senate members, and has just begun to get organized and start its work; ASNC is excited by this legislative interest in IDD issues, including autism, and we look forward to working with the members in the sessions to come.

Free DMV identification for people with IDD, HB 1033: ID Card Fee Waiver/Disability passed the House and Senate and allows individuals with an intellectual and/or developmental disability to obtain free non-driver’s identification from the NC Department of Motor Vehicles beginning October 1. Individuals must present a letter from their physician stating that they have a developmental disability to obtain free identification. This ID can be used as an approved document for Voter ID requirements. (Note that under recent voter identification laws, individuals may obtain non-driver’s identification for free if they state it is “for purposes of voting.” These voter identification laws are currently under review by the courts and may or may not remain in place. The new law for free, non-driver identification cards for people with DD would remain in place regardless of what happens with voter identification laws.)

Enact Uniform Law on Adult Guardianship, H817: This law enacted in 41 other states will clarify issues around interstate jurisdiction, mobility, and transferability of guardianship and interstate recognition of guardianship orders. The bill was worked on by guardianship and advocacy organizations, and was passed and signed into law.

Military families stay on Innovations waitlist, HB 842: Establishes a virtual wait list for families in the military waiting for waiver slots. Allows families to remain on the waiver wait list when relocated outside of North Carolina for military service, as long as the family retains its North Carolina legal residence and intends to return upon completion of the military service.

Medicaid Transformation changes: North Carolina has already passed legislation that will, over the next 5-7 years, move our Medicaid system to a managed care model offering both statewide private managed care as well as regional health system managed care options. The goal is to improve health outcomes and integrate physical and behavioral health care, while controlling costs. This year, clarifying changes were made to that bill based on the 1115 demonstration waiver submitted by North Carolina to the federal government that will:

  • Remove the “Department of Health Benefits” as the single state entity in charge of Medicaid and return authority to the Department of Health and Human Services, as required by the US Centers for Medicare and Medicaid Services (CMS).
  • Make several key adjustments around who and what will be covered in the capitated (managed care) system and require NC DHHS to submit reports on the progress of the waiver to the Joint Legislative Oversight Committee on Medicaid and NC Health Choice. New groups and programs exempted from the 1115 managed care demonstration waiver include:
    • PACE
    • School services provided under an IEP, including audiology, speech therapy, physical therapy, nursing, and psychological services, performed by schools or individual contracted with LEA.
    • Children’s Developmental Services Agencies
    • Presumptive Medicaid eligible people

 

If you have questions about North Carolina policy issues, please contact Jennifer Mahan, ASNC Director of Advocacy and Public Policy at jmahan@autismsociety-nc.org or 919-865-5068.