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.

2016 Legislative Wrap-Up: Education Budget and Bills

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

Teacher and school staff raises, education programs and supplies: The budget adjustments bill adds $240 million for teacher and school staff raises, plus an additional $10 million in merit-based incentives. This represents an average 4.7% increase in school staff salaries. Additional funds were added for school supplies ($2.5 million R), digital learning programs ($4 million R, 0.7 million NR) and textbooks and digital materials ($10 million NR). Cuts were made to central office administration at the LEA level ($2.5 million R), the NC Department of Public Instruction ($250,000 R), and grants to 17 afterschool providers from the at-risk supplemental funds ($4.7 million).

K-12 Disability Scholarships: Adds $5.8 million (R) to address the waiting list in the scholarship program for kindergarten through high school students with disabilities attending non-public schools. The program provides scholarship grants of up to $4,000 per semester for eligible students. The revised net appropriation for Special Education Scholarships is $10 million. For more information on who qualifies and how to apply for the program go to the website of the NC State Education Authority. A special provision (technical correction bill) in the budget expands the type of students who qualify for the scholarships. A reminder that only students from K-12 with disabilities who leave the public school system or enter the non-public school system in kindergarten or first grade qualify for the scholarships. The new requirements in the budget now categorize eligible groups based on a priority system which also expands eligibility:

1st priority: Eligible students who received a scholarship in the previous semester

2nd Priority: Students who were enrolled in a public school during the previous semester, OR  who received special education or related services though the public schools as a preschool child with a disability the previous semester, OR a child identified as a child with a disability in the public school system before the end of initial enrollment in kindergarten or first grade, OR (new) a child whose parent or legal guardian in on full-time duty status in the armed forces.

3rd/last priority: (new) a child who has been living in the state for at least 6 months.

These changes allow children with disabilities who are in military families (those currently here and those who moved to the state recently) as well as children with disabilities who left the public school system in previous years to attend non-public schools the opportunity to apply for scholarships. Because qualification for the program is complicated, we encourage families who think they may qualify to contact the NC State Education Authority directly. Please note that if applications for scholarships exceed the funds available for the program, children will be put on a waiting list until funding is available.

Student assault on teacher/felony offense, S343: Advocates including ASNC were closely monitoring this bill that would have made any “assault” (not defined in law) on a teacher or school staff a felony offense. There are a number of objections to the law: NC treats 16- and 17-year-olds as adults and charges, tries, and penalizes them in an adult system; assaults that result in injury already are classified as a felony; and for individuals with behavior disorders, such as autism, their disability may be at the core of the behavior problem. Making it a felony would not change behavior or address the issue of managing behavior in school. Disability advocates were able to get children with an IEP exempted in the bill, but many children with disabilities are not identified by schools. The NC Senate passed the bill, but the NC House still had it under review by committees at the end of session, and it did not pass.

Math curriculum changes, H657: This bill, which came very close to passing in the final weeks of the session, would have required changing North Carolina’s public school math curriculum, despite evidence that changes made in the past four years to the math curriculum are improving students’ math testing and college readiness. ASNC and other advocates were concerned that a new curriculum adapted for students in Occupational Course of Study or for those with learning challenges would not be ready in time given the short deadlines for implementation, that changes might require a return to older standards for passing college-ready math courses for OCS students, and that students enrolled in virtual schools would not have access to math courses. Advocates asked that students with disabilities be exempted from the curriculum changes. Conference committees appointed to sort out differences in the House and Senate versions of the bill were not able to meet, and the bill did not pass.

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.

Make 2016-17 Your Child’s Best School Year Yet

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It’s almost here again – back-to-school time! Are you ready? Or does the mere thought of a new school year make you anxious? The Autism Society of North Carolina wants to partner with you and your child for a successful school year.

Please take advantage of the resources we offer.

IEP-Toolkit-webToolkits: We have many easy-to-use, accessible toolkits to guide you through challenging times. Several are on school-related topics: The IEP, Behavior & the IEP, and Bullying. All of these free toolkits can be read online or downloaded and printed: http://bit.ly/ASNCtoolkits

Autism Resource Specialists: We have 17 Autism Resource Specialists across the state, standing by to consult with you. They are all parents of children or adults with autism themselves, so they have firsthand knowledge and a unique understanding of what you’re going through. They strive to empower families to be the best advocates for their children. Find the Autism Resource Specialist serving your area: http://bit.ly/AutismResourceSpecialists

Podcasts: Several of our Autism Resource Specialists got together for a back-to-school discussion. Listen in with our podcast titled “Back to School: What You Need to Know and Do for a Successful Start!” You can check out the complete list of available podcasts here: http://www.autismsociety-nc.org/podcasts

Workshops: Our Autism Resource Specialists also share their expertise through workshops, both in-person and online. Some upcoming webinars are IEP Basics: Frequently Asked Questions, IEP Notebook: Taming the Paper Monster, and Preparing for College Starts at Home. We also have many workshops in various locations; find the complete schedule here: http://bit.ly/ASNCWorkshopCalendar

backtoschool Coupon_0816_web2ASNC Bookstore: If you are looking for books and videos, our bookstore is the place to go. The ASNC Bookstore is the most convenient place to find the very best autism resources, with over 600 titles. Bookstore staff members are always willing to share recommendations on particular topics. And until Aug. 31, we have a 20% off sale with code BTSS2016! Browse online: www.autismbookstore.com

Chapters & Support Groups: ASNC has more than 50 Chapters and Support Groups around the state. Chapters provide a place where you can receive encouragement from families facing similar challenges and share experiences, information, and resources. Find one near you: http://bit.ly/ASNCChapters

Our blog: Of course, you already know about our blog because you are reading it right now. But have you subscribed? You don’t want to miss the educational posts from our Autism Resource Specialists or Clinical staff. One recent education-related post was College Options for Students with ASD. Use the search box at the top right to look for posts on particular topics.

Stay connected: Last but not least, connect with us! Sign up to receive our monthly email newsletters and the twice-yearly Spectrum magazine at http://bit.ly/ASNCStayInformed. Follow us on Twitter and Facebook. We are constantly sharing helpful information, and we don’t want you to miss any of it.

Still have questions? Please contact us so that we can help you find the help you need:

800-442-2762 (NC only)
919-743-0204
Autism Society of North Carolina
505 Oberlin Road, Suite 230
Raleigh, NC 27605
info@autismsociety-nc.org

 

2016 Legislative Wrap-Up: The Budget

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

The NC House and Senate agreed on a budget adjustments bill for the second year of the state’s two-year budget, which allocates a total of $22.34 billion across state services including education and health and human services. The 2016 budget adjustments spend less than 3% over what the 2015-2016 budget provided and only adjust the second year of the biennial budget. The budget includes funds for the state’s rainy day account, teacher and state employee raises, additional K-12 students with disabilities scholarships, and 250 additional Innovations home and community waiver slots, while reducing the base budget for Medicaid to reflect lower projected costs for healthcare services. Changes to tax revenue were addressed in a separate bill, which broadens the sales tax base and lowers individual income taxes by increasing the standard deduction from $1,000 to $2,000 through next year.

The $152 million planned cut to single-stream funding for mental health, developmental disabilities, and substance abuse services (MH/DD/SA) remains in the budget. Last year, $120 million was removed with a provision to restore $30 million if targets were met by the end of the 2015-16 fiscal year in June. Those targets were met, and the $30 million restored. The same budget provision remains in place for this year: if targets are met, $30 million will be restored at the end of 2016-17. However, the overall cut remains at an additional $152 million from LME/MCO reserves, typically used for services to people without other health-care options.

There are a few special provisions that target issues for the intellectual and/or developmental disability (I/DD) community including a comprehensive look at federal and state changes to the I/DD system, a strategic plan to address behavioral health in NC that looks at gaps in the LME/MCO system, and a study on the rates paid for certain types of services. As we look toward the 2017 budget process, single-stream dollars will have a significant deficit that could affect direct services across the state. Overall, the health and human services budget attempts to address key priorities from the General Assembly and the governor with small expansions to crisis funding, waivers, and disability scholarships and the preservation of existing autism services in Medicaid and through the nonprofit funding sections, but no large-scale expansion of services or special education funding.

The full budget bill with special provisions and conference reports listing specific dollar amount changes can be viewed at www.ncleg.net; links to budget documents are in the left column. The overall budget includes technical corrections made in House Bill 805 that may not be included in the ratified version of the budget until after it is signed into law. In the sections below where “recurring funds” are mentioned with an R, this means that the program will be funded in an ongoing way (at least for the next year and hopefully into future years) and “non-recurring” noted with an NR indicates that funds are one-time and only for the 2016-17 fiscal year.

 

Health and Human Services Budget

Innovations waiver slots: The final budget includes $2.6 million (R) for 250 Innovations home and community-based waiver slots (formerly CAP-IDD) to begin opening January 1 2017, which were included in the governor’s budget proposal. Innovations 1915 (c) waivers provide services to people who qualify for institutional level care because of intellectual or developmental disabilities, but can be served under a community-based program in their homes.

Replacement of LME/MCO single-stream funds: $30 million will be restored to single-stream funding which is used for MH/DD/SA services and individuals that are not eligible for Medicaid. An additional $30 million will be made available if there is a surplus in the Medicaid budget. This is well short of the $120 million and $152 million removed in budgets last year and this year.

Governor’s Task Force recommendations: The budget reserves $10 million (R) and $10 million (NR), to implement the recommendations of the Governor’s Task Force on Mental Health and Substance Use. The funds shall be held in the Mental Health and Substance Use Task Force Reserve Fund, will not revert, and shall remain available until expended. The task force recommendations include increasing access to child crisis services.

Dix property and crisis beds: The budget includes provisions for the sale of the Dorothea Dix Hospital property: $18 million and $2 million in funds will go toward increasing access to behavioral health care hospital beds and crisis centers for children and adolescents.

Medicaid rebase: This removes $350 million (R), 7.8%, from the Medicaid budget based on lower than projected costs for health care and the number of people eligible for Medicaid. These funds were moved into the general fund to support other budget increases.

 

Special provisions of note

The state budget includes policy provisions directing how funds are to be used and often include requirements to look at how departments or programs are operating, including the fiscal impact of making changes to them. A number of provisions could have effects on intellectual and/or developmental disability services.

IDD Study/Study Innovations Waiver: In the budget, the General Assembly’s Joint Legislative Oversight Committee on Medicaid and NC Health Choice is directed to study issues related to the delivery of services for people with I/DD, including causes and solutions for the growing wait list for Innovations home and community-based waiver slots. Potential solutions to address the wait list that are mentioned in the study are funding increases, creating “supports” waiver slots, and utilizing 1915(i) waiver options. The study is also expected to take a look at issues surrounding single-stream funding (state funds for non-Medicaid services), the impact of federal mandates on supports and services, and the coverage of services for autism including any state plan amendments needed to address guidance from the Centers for Medicare and Medicaid Services that directs states to offer autism behavioral services such as Applied Behavior Analysis (ABA) or other treatments.

Rate study for residential services: This would study the “adequacy” of rates paid to providers for residential services, including supportive services such as respite, room and board, Special Assistance, transportation, and state-funded supports.

LME/MCO gap analysis and strategic plan: Section 12F.10.(B) of the budget special provisions requires the NC Department of Health and Human Services to develop a strategic statewide plan to “improve the efficiency and effectiveness of state funded behavioral health services,” including IDD services. Included in this plan are a determination of the state agency responsible for state-funded behavioral health, defining current and future roles of the LME/MCOs; a process for including measurable outcomes in contracts with providers and managed care organizations; a statewide needs assessment for MH, IDD, SUD, and TBI, looking at a continuum of care across services and counties; “solvency standards” for fiscal management of LME/MCOs; and anything else needed for the report. The plan and report to the General Assembly is due January 1, 2018.

Study of Medicaid coverage for school-based health: The General Assembly has asked NC DHHS to identify all school-based health services that are eligible for federal matching funds through Medicaid and report on the fiscal impact of adding Medicaid coverage for these school-based services not currently offered in NC.

Report on the progress of ABLE program trust: The Department of the State Treasurer is required to report to the General Assembly by December 1 on the status of the Achieving a Better Life Experience (ABLE) Trust program that would allow people with disabilities and their families to open 529 savings plans.

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

Join SPARK to Support Research

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The University of North Carolina at Chapel Hill and the Autism Society of North Carolina (ASNC) are excited to announce SPARK, a new genetics research project aimed at learning more about Autism Spectrum Disorder (ASD). We invite the North Carolina autism community to join the UNC SPARK cohort to move autism research forward.

SPARK’s mission is to speed up research and advance the understanding of the causes and treatments of autism. SPARK will be the nation’s largest autism study to date. UNC-Chapel Hill is one of 21 SPARK partners around the nation, and it is the only SPARK clinical partner in North Carolina.

The SPARK team hopes to learn more about autism through information provided by families (such as behavioral surveys and family history information) as well as through DNA analysis of saliva samples from individuals with ASD and their biological parents. UNC’s goal is to get thousands of families in North Carolina involved in SPARK.

Registration for SPARK is simple and is done entirely online. SPARK will send DNA collection kits to your home along with prepaid mailers so you can return saliva samples to the lab at no charge.

Not everyone in SPARK will have changes in genes known to be associated with autism. But you can decide whether you would like to know about any genetic changes that SPARK may find. If there are genetics results that can be returned to you, SPARK will work with you and your health-care provider to provide that information.

Hundreds of North Carolina families have already participated in SPARK and are excited to be a part of such an important and large-scale project. Families have told us that not only do they enjoy participating as a family, but that “knowing that [they] could be a part of something bigger to help others” was important for them.

Other families hope that SPARK may ultimately lead to a greater acceptance of Autism Spectrum Disorder.

SPARK is open to anyone with a professional diagnosis of ASD and his/her biological parents and siblings.

If you or someone you know may be interested or has any questions, please email UNC SPARK at SparkForAutism@unc.edu or call Corrie Walston, UNC SPARK Project Coordinator, at 919-966-6795.

You can also visit https://www.sparkforautism.org/UNC to learn more and register. Together, we can help spark a better future for all individuals and families affected by autism.

To learn more about autism research at UNC, please visit www.cidd.unc.edu/registry/news.

WNC Run/Walk for Autism Inspires Pride

 

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Jesse Trimbach and his father, Joe, at the WNC Run/Walk for Autism

Jesse Trimbach is 28 and lives in his own apartment in Asheville. He uses public transportation to get to the Habitat for Humanity office, where he volunteers doing data entry. He takes pride in making his own meals and in being independent.

Jesse was diagnosed with autism at 2½ years old. He was in mainstream classes through his school years, with some supports, and has taken some courses at a technical college. He has worked at a library and at a funeral home doing data entry, and he is interested in computers and politics.

His mother, Kathy, said, “Jesse has accomplished a tremendous amount, and we are very proud of him.”

“Jesse is able to live on his own with support from the Autism Society of North Carolina,” Kathy said. A community skills instructor assists Jesse with organization, conversation and social skills, cooking, and safety issues.

Jesse’s parents recently traveled to Europe, and they knew he would be fine while they were gone both because of Jesse’s ability to live independently and because of the services from the Autism Society of North Carolina (ASNC).

“Their staff is trained in autism, since it is their primary focus,” she said. “And it’s a collaborative effort between parents and the workers. I feel like I can talk with them about anything.”

The family’s experience with ASNC has inspired them to participate in the WNC Run/Walk for Autism, ASNC’s fundraiser held each September at UNC-Asheville. They have attended every year since moving to Asheville from Seattle about six years ago, and they have raised money as part of Team Trimbach.

“It’s becoming more and more important to get out and raise money,” Kathy said. “Families need services.”

Jesse said, “It’s important to help raise money for people on the spectrum, so they can receive more services and benefits. I feel proud of joining the Run/Walk.”

Besides supporting the cause, the family enjoys the event. Jesse has fun seeing people he knows from ASNC as well as participants from other years. “It’s a real joyous sense of community. He loves it!” Kathy said.

Educating the community about autism is another important part of ASNC’s eight Run/Walks for Autism across the state. ASNC believes that individuals with autism deserve meaningful lives as contributing members of the communities in which they live. People with autism have much to teach us, and they have unique gifts that can make our communities a better place to live for all of us.

Kathy and Jesse have done their part in raising autism awareness. When they lived in Seattle, Jesse’s middle-school psychologist taught a course on inclusion for regular education teachers at Western Washington University. Kathy and Jesse did a series of presentations each semester on supporting students with autism through the years. “Jesse really enjoyed doing these presentations and was very articulate in his speaking and in answering questions,” his mom said.

“Individuals with autism also make great employees,” Kathy said, “and employers should consider hiring more of them. “

Jesse, who hopes to find employment again soon, says that he appreciates it when people have high expectations of him. Parents of young children with autism should “teach them how to be more independent as they get older,” he said.

Thanks to Jesse, his family, and hundreds of others participating in the WNC Run/Walk for Autism, ASNC will be there for parents as they do just that.

 

Step out to improve lives in the 11th annual WNC Run/Walk for Autism at 1:30 p.m. Sunday, Sept. 11! The event at UNC-Asheville will include a 5K race, a recreational 1K run/walk, activities for children, music, and refreshments. Vendor space will showcase local businesses, service providers, support resources, and sponsors. Proceeds will fund local programs of the Autism Society of North Carolina.

Register today: http://www.wncrunwalkforautism.com

 

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