Public Policy Update

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

 

Federal News

American Health Care Act (AHCA) Update

Thank you for calling your US House of Representatives member regarding cuts to Medicaid in the AHCA and the importance of health-care coverage for autism. Your direct advocacy matters! The US House was not able to get enough votes to support the proposed replacement for the Affordable Care Act (ACA). For now, the legislation has been shelved; however, Congress and the Trump administration continue to discuss new proposals around both an ACA replacement and Medicaid funding changes. The Autism Society of North Carolina will continue to monitor federal policy changes. We encourage you to read up on federal proposals; we will be posting occasional updates, alerts, and links to resources about health-care proposals. For more information, read the Kaiser Family Foundation policy analysis comparing AHCA, ACA, and other proposals.

Medicaid is a program that serves millions of people with disabilities and complex health conditions, including people on the autism spectrum. Medicaid Home and Community Based waivers, such as North Carolina’s Innovations and CAP programs, allow people with serious disabilities to live at home with families or in community settings. If you are not already aware of how Medicaid supports people, we urge you to begin reading up on program. ASNC will be posting occasional resources and links to learn more about Medicaid in NC and across the country.

 

Supreme Court Decision about Special Education

The Supreme Court sided with parents who removed their son from school because of an inadequate IEP. In the Court’s ruling, it said that the “appropriate” portion of the “free and appropriate education” guaranteed by IDEA, should be more than just ensuring that children make barely above minimum progress. This appears to indicate legal support for higher standards for IEPs and student advancement: that students with disabilities should be making “meaningful” progress in their education.

What is not clear from the ruling is how schools will help students achieve this progress when IDEA has never been fully funded at the federal level as was promised when the bill passed. Schools are under pressure to serve more special education students with limited resources and a shortage of special education teachers. The Autism Society continues to advocate and the state and federal levels for special-education funding and education programs that address the unique needs of students on the autism spectrum. To learn more, read the National Disability Rights Network statement on the ruling.

 

North Carolina and NC General Assembly News

NC ABLE Update

The NC Department of the State Treasurer has just announced that checking and debit options for NC ABLE accounts are now available. NC ABLE allows people to save money to pay for future or current expenses without losing eligibility for certain government benefit programs.

Signing up for NC ABLE accounts is quick and easy. For more information about how NC ABLE might benefit you or someone you know, see the FAQs.

State Budget

The governor has release his budget proposal outlining priorities for the new administration. The release of this budget also is the start of the legislative budget process for North Carolina. The sovernor’s budget proposal has a number of funding recommendations that could help those on the autism spectrum. Details are below, but include proposals to fund education support, adult guardianship, special assistance, early child development agencies, community-based MH/DD /SA services, complex children’s services, Medicaid services, and Innovations waiver slots.

The NC Senate will start the General Assembly budget process this year by introducing their version of the budget legislation. The General Assembly budget bills are not required to be based on the governor’s proposals. House and Senate leaders are said to be working closely on their proposals, and we expect to see details in the next few weeks.

ACTION: This is a great time to introduce yourself to your state senator and ask North Carolina’s General Assembly to fund much-needed services for autism.

1) If you don’t yet know which state senator represents you, check the second (middle) map on this webpage.

2) Click the link to connect with the district page and find the senator’s email or mailing address. Most are firstname.lastname@ncleg.net, and the address is listed above their email.

3) Write a short, friendly email or handwritten note:

  • Introduce yourself and mention you live and/or work in their district
  • Tell them how you are connected to autism (family, self-advocate, work with, etc.)
  • Ask them, politely, to fund one or more of the governor’s proposals and explain in a sentence or two how that will help someone with autism. For example: “We will be waiting for 7 or more years for services unless Innovations waiver slots are funded.”

This is just one example of what to write; use one that best fits your situation. For more help on advocating, see our tips or our Advocacy 101 toolkit. If you need help figuring out what to say in your email, please contact Jennifer Mahan, our Director of Advocacy and Public Policy, at jmahan@autismsociety-nc.org.

 

Governor’s Budget Proposal Details

Education

  • More School-Based Personnel to Improve Student Outcomes. Establishes a new allotment to be allocated to LEAs based on average daily membership (ADM). Provides $20 million from lottery receipts as flexible funding for LEAs to hire additional school-based personnel who will have a direct impact on improving student outcomes, including assistant principals, nurses, behavioral support staff, teaching assistants, and other instructional support personnel.

Health and Human Services

  • Adult Protective Services/Guardianship. Provides$4.6 million for 2017-18 and 2018-19. Improves the safety of adults who are elderly or disabled and who are subject to abuse, neglect, and exploitation. County Departments of Social Services receive thousands of reports annually and must evaluate and, when needed, provide adult protective services (APS). Additional funding will provide aid to counties to hire social workers needed to reduce APS caseloads and thereby increase quality of service. In addition, there is an increasing need for public legal guardians, who are required when an adult is deemed by the courts to be incapable/incompetent. Funds are provided to increase capacity to provide guardians through local entities.
  • State County Special Assistance. Provides a cash supplement to help low-income, elderly, or disabled individuals remain in their homes or live in licensed adult care homes through the State County Special Assistance program. This program is shared at a 50% participation rate between the state and county. Increased funding is needed to ensure this living assistance benefit is available based upon anticipated enrollment and payments.
  • Invests in Children’s Development Services Agencies. Supports children and families by investing in the Children’s Developmental Services Agencies (CDSA). The 16 regional CDSAs, which serve children who have developmental disabilities and are ages 0-3, require additional staff to comply with federal mandates. Current staff maintain high caseloads that impede their ability to complete evaluations and assessments and initiate services within the required timelines. The request would fund clinical personnel and service coordinators. ($2,541,482R FY17-18 $6,397,430R FY 18-19)

MH/DD/SAS

  • Targeted Reinvestment of Community Services Funding. The base budget increases community services funding by $152.8 million on a recurring basis. Of these funds, $105.8 million in FY 2017-18 and $83.4 million in FY 2018-19 will be allocated to the Local Management Entities/Managed Care Organizations (LEM/MCOs) to meet the service needs of their catchment areas. The remaining balances, $47.0 million in FY 2017-18 and $69.4 million in FY 2018-19, will remain in the community service system, but targeted re-investments to address emerging service needs including those for dually diagnosed children (I/DD and MI), and local in-patient bed capacity. Other targeted investments include support for Innovation waiver slots and housing and supported employment pursuant to the settlement with the US Department of Justice.
  • Disability Rights of North Carolina Settlement – Specialty Treatment and Assessments.

Funds the department’s settlement agreement with Disability Rights NC. The agreement will build system capacity to better serve children with a dual diagnosis of intellectual/ developmentally disabled (I/DD) and behavioral health needs. The request will fund comprehensive assessments and services, to include home health care, rehabilitative and personal care services, and an outpatient clinic at the Murdoch Center. (This is funded through the targeted reinvestment of community services funding in the base budget.)

Medicaid

  • Medicaid Rebase. Provides funds for changes to enrollment, utilization, costs, rates, and services associated with the Medicaid program. This recommendation reflects the amount of change from the base budget to fund the current Medicaid program in the upcoming biennium. This would include funds to address autism behavior services under Early Periodic Screen Diagnosis and Treatment requirements (EPSDT).
  • Expand DD Innovation Waiver Slots. Provides funds for changes to enrollment, utilization, costs, rates, and services associated with the Medicaid program. This recommendation reflects the amount of change from the base budget to fund the current Medicaid program in the upcoming biennium.
  • Extend DD Innovation Waiver Slots to Lower-Acuity Individuals. Fully funds an additional 1,000 NC Innovations waiver slots, effective January 1, 2018, for individuals that do not need the full range or intensity of services offered under the current waiver, but who will benefit from service at their specific level of need. (This is funded through the targeted reinvestment of community services funding in the base budget.)

The Senate and House are coordinating on the development of NC’s two-year budget, set to roll out in the coming weeks.

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.

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.

 

 

 

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.

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

 

PALS creates joy at Sanderson High School

Richard bounces to the beat during the PALS club Halloween party at Sanderson High School in Raleigh.

Richard bounces to the beat during the Halloween party put on by the PALS club at Sanderson High School in Raleigh.

It was 5:45 p.m. on a Thursday, but the cafeteria of Sanderson High School in Raleigh was abuzz with activity. Teens in togas and tutus flitted back and forth, hanging streamers and taping grinning ghosts and grimacing skulls to the walls. Platters of donated snacks and cupcakes were set out on tables in one corner, and a DJ started pumping out music at the other end of a large space cleared of tables and stools.

By 6:10, a couple of dozen students were already dancing when a tall young man named Richard came bounding in wearing a sailor hat. He headed straight for the DJ, jumping in time to the beat. “He won’t stop bouncing all night,” said one of the chaperoning teachers, who later approached him occasionally to encourage him to drink from a bottle of water.

The student leaders of PALS are Jacquelyn Hedrick, George Sharpe, Taylor Jost, Elizabeth Fortier, Grace Clougherty, Olivia Kleven, Katie Olson, Anna Beavans, Halah Jadallah, Ashleigh Shelor, and Hunter Moore.

The student leaders of PALS are Jacquelyn Hedrick, George Sharpe, Taylor Jost, Elizabeth Fortier, Grace Clougherty, Olivia Kleven, Katie Olson, Anna Beavans, Halah Jadallah, Ashleigh Shelor, and Hunter Moore.

This scene of Halloween joy was the creation of the Sanderson PALS Club. Passing Along Lifelong Smiles is completely student-driven, said Ginger Hamrick, one of Sanderson’s AU-IV teachers. More than 60 students are in PALS, providing friendship and educational support to students in the school’s two self-contained classrooms for students with autism. They also do a social event about once a month, like the Halloween party. Hamrick said these social activities are important, too. The students with disabilities might be past the age when most of society thinks it is appropriate for them to trick or treat, but they still love Halloween. PALS students are always looking for ways to provide joy to the students in the special education classes.

“I could tell you a story about any one of these kids that would bring a tear to your eye,” Hamrick said. She made good on that promise, telling of a PALS member who was receiving about 14 calls a day from one of her students with autism. She told the member that she could talk to her student about not calling so often, but he said it wasn’t necessary. “He’s never had anybody to call before,” he said.

“They’re building friendships,” Hamrick said. Her students learn about things that matter from the PALS members, such as personal space or how to build a relationship. The PALS members play a huge part in Sanderson’s AU program, Hamrick said. “I like them to learn things that they’ll use forever.”

“A unique opportunity”

PALS is unique in that it brings kids from all of the schools’ social groups together, Hamrick said. Some of the PALS members come to eat lunch with her students every day. Jacquelyn Hedrick, the PALS president, comes every morning before school, during lunch, and to act as a teacher assistant for third period. “She is really passionate about these kids,” Hamrick said.

Jacquelyn Hedrick, PALS president, said the Halloween party was one of her favorite events of the year.

Jacquelyn Hedrick, PALS president, said the Halloween party was one of her favorite events of the year. “I think I broke down in tears three times that night just seeing how happy they were.”

Jacquelyn, a junior, started coming to PALS as a freshman even though she had never been around people with special needs and was a little uncomfortable at first. She decided to stay when the students with autism started calling her by name. “I’ve always wanted to reach out and help people, and I’ve been presented with such a unique opportunity,” she said. PALS gives the students who usually are in self-contained classrooms an opportunity to see how their peers without disabilities interact with each other, she said.

Hamrick said that the PALS members recognize that they are benefiting from the group, too. They enjoy getting to know the students with autism and becoming friends over shared interests. “My guys treat everybody like rock stars when they see them in school,” Hamrick said. Who wouldn’t love that?

The PALS Club participated as a team in this year’s Triangle Run/Walk for Autism, and on their team page, Jacquelyn wrote: “PALS Club is often the reason we get out of bed to come to school in the morning and it’s the reason we’re excited to come back over the summer. Spending time with our PALS is the highlight of our day. We have made amazing friendships, but we have also seen our students grow in their social skills through interacting with each other and with PALS. It truly makes a significant difference in our lives and in theirs.” (We thank PALS for raising $1,680, helping even more individuals affected by autism!)

Two rules: Be respectful. Have fun.

PALS has just two rules, Hamrick said. Be respectful. Have fun. “I wanted everyone who was there to be there because they wanted to be,” she said.

Jacquelyn said for her, the most fun is when they all go out into the community like when they attended the State Fair together last week. Parents appreciate all that PALS does for their kids, she said, telling her how grateful they are that their kids are not missing out on experiences, that they look forward to school, and that they have friends.

Last year, the PALS members and Hamrick’s students went to Special Olympics together. Hamrick had T-shirts made, and they all wore the same one. She said the parents of her students with autism were thrilled to have a photo in which it was hard to pick out their children.

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“The PALS group has become our miracle and the light of my son’s school days for two years now,” said Anthony D’Erasmo. “They are young, inspiring individuals who dedicate their time to our exceptional children. As parents they provide us hope. My son looks forward to having fun every day – and forging lasting friendships. We absolutely love them for all they do, and the smiles they pass along! Thanks to Jacquelyn and all our PALS for all they do. We are so thankful he is in a school that has created such an exceptional program.”

“Ideally, every school would have a program like this,” Jacquelyn said. She said it takes supportive teachers, administrators, and parents for a program to succeed.

Hamrick believes that PALS succeeds because the students were given a chance. “We opened the door and said hey, if you want to come, come,” she said. “Every school is probably full of these kids and they just need an opportunity.”

Sola Coffee Cafe, Sawmill Tap Room, Chick-Fil-A, Moe’s, Starbucks, and Red, Hot, & Blue donated refreshments for the Halloween party. DJ Marcus Ward also donated his services.

A Closer Look at North Carolina’s 2015-17 Budget

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

The new state budget for budget years 2015-17, which began on July 1, 2015, sits at $21.7 billion. It includes several important policy initiatives for people with disabilities, but it also makes changes that could keep people with autism, intellectual and developmental disabilities, and other conditions from gaining access to health care and supportive services.

Note that where two numbers are listed for funding amounts, the first number is for fiscal year 2015-16 and the second is for fiscal year 2016-17. Recurring funds mean that the program will be funded in an ongoing way (at least for the next two years), and nonrecurring indicates that funds are one-time and only for a particular year.

Medicaid

This year’s budget funded increases in the Medicaid rebase, which is the funding it will take to continue serving the eligible population with current services. No cuts were made to Medicaid eligibility or to optional Medicaid services. This is a big win; previous budgets have included one if not both of these cuts.

In addition, Medicaid reform legislation was taken out of the original budget bill and passed as separate legislation. The changes to North Carolina’s Medicaid health care and disability services program will create a new Medicaid managed care system and change the state agency that operates the Medicaid programs. Medicaid services will be contracted out to private managed care companies and regional provider (hospital) led health systems. ASNC staff are reviewing the final Medicaid bill and will post more information in the future.

The Medicaid rebase was funded at $299,358,485 recurring and $496,326,936 recurring.

Medicaid reform was funded at $5,000,000 recurring and $5,000,000 recurring.

Vocational Rehabilitation

No cuts were made to Vocational Rehabilitation funding. Again, previous budgets have included cuts.

Early Intervention

No cuts were made to early intervention services, and Children’s Developmental Service Agencies (CDSAs) were not consolidated further.

State-Funded Services

Cross Area Service Program (CASP) funding did see an increase of $800,000 recurring in the first year of the budget and $1.6 million recurring in the second year. CASP funds services such as employment and vocational supports for people with IDD.

“Single-stream funding,” which provides some state funds for people without health care (non-Medicaid populations) was removed from the budget, and the General Assembly required LME/MCOs to use their fund balances to make up the difference. Single-stream funding pays for services such as developmental therapies, respite, employment support, residential supports, and other services. This swap removes state funds and replaces them with LME/MCO cash fund balance money for two years at the following amounts: $110,808,752 and $152,850,133. This is a nonrecurring adjustment, and the special provision language sets up the expectation that no service will be reduced or cut. Special provision language also states that the LME/MCO system must use fund reserves to fill the state dollar reductions.

Advocates have several concerns:

  • LME/MCOs have varying fund balances, and at this time, it is not clear what formula will be used to determine where funds are reduced.
  • Fund balances are intended to be used to expand services, so this “swap” that removes recurring state funds and replaces them with onetime LME/MCO funds from savings eliminates the possibility that funds can be used to expand services. The funds instead will be used simply to maintain existing services.
  • House Bill 916, which created the current public managed-care system, promised that savings would be retained and used to expand services to the thousands waiting for help.
  • It’s not clear that there are enough funds to take the *second round of cuts* in 2016-17, leaving the real possibility that services for people with autism and IDD without Medicaid or other health care will continue to shrink. ASNC will be working with other advocacy groups to prevent further cuts and services reductions.

Crisis Services

New NC START funding for crisis prevention and intervention was included in the budget with $1,544,000 in recurring funding to support children and adolescents with intellectual or developmental disabilities for both years of the budget. While this is not enough funding to support the significant need for crisis services, it is a first step for children and youth who have very limited options.

ABLE Act Funds

The NC Office of the Treasurer will oversee the new ABLE Act 529 savings accounts. The budget includes $215,000 in recurring funds and $250,000 in nonrecurring funds for 2015-16, and $540,000 in recurring funds and $55,000 in nonrecurring funds to administer the new savings plans, provide information to financial experts, and promote the plans to people with disabilities and their families. The IRS is expected to publish their final rules on how the plans will operate by the end of 2015, and NC hopes to have the ABLE savings plans available by the summer of 2016.

Education

The budget fully funds teacher assistants, lowers class size for K-3 grades, and fully funds the current exceptional children’s head count. Reading camps have been expanded to include first- and second-grade students who are at risk for not reaching third-grade reading proficiency. The program also will continue to support at-risk students who reach reading proficiency to ensure they stay on track.

No new funds are included to increase per-pupil spending for exceptional children (special education) or to alter the 12.5% cap on special education funds. ASNC continues to discuss with Education Committee members the ways to improve special education and funding.

Significant sections of House Bill 921, Educational Opportunities for People with Disabilities, also were included in the budget in two separate sections on elementary and post-secondary education. Section 8.30.(a) states that North Carolina will study and develop policy changes for improving outcomes for K-12 students with disabilities including ways to:

  • Raise graduation rates
  • Provide more outcomes-based goals
  • Ensure access to career-ready diplomas
  • Integrate accessible digital learning options
  • Provide earlier and improved transition planning

State agencies are expected to reform the IEP process to focus on outcomes-based goals, bring together stakeholders to improve transition services plans, create ways for students with IEPs to access Future Ready Core Courses of Study (technical and vocational education) as a viable alternative to Occupational Course of Study diplomas, and look at model programs for increasing school performance and graduation rates. The NC Department of Public Instruction is required to report to the General Assembly’s Joint legislative Oversight Committee on Education on the above activities by November 15 and annually thereafter.

Section 11.19.(a) requites state agencies to collaborate to support educational opportunities for students and young adults with intellectual and developmental disabilities, particularly in transitioning to adulthood, post-secondary education, and employment. It requires the NC Department of Health and Human Services; the Division of Mental Health, Developmental Disabilities, and Substance Abuse Services; the University of North Carolina system; and the community college system in consultation with the NC Postsecondary Education Alliance and other stakeholders to:

  • Assess system gaps and needs for supporting students/people with disabilities transitioning into adulthood
  • Develop policies and programs to expand post-secondary educational options and employment
  • Implement more public awareness of post-secondary education and employment of people with disabilities
  • Develop joint policies and common data indicators for tracking outcomes of people with disabilities leaving high school
  • Consider options for technology to link agency databases

ASNC advocated for funding to support technical assistance centers to support the above activities, but these were not funded in the budget. We will be going back to the legislature during the short session to continue to work on additional funding.

Students with Disabilities Scholarships

The Students with Disabilities Scholarship for students with IEPs who opt for non-public education was increased from $3,000 to $4,000 per semester ($8,000 per year), and policy changes allow funds to be dispersed to families and schools prior to the school year. Due to increased demand, there is a waiting list for the scholarships. ASNC will continue to advocate for additional funds to serve those waiting.

In addition, House Bill 334, passed at the end of session, will change the re-assessment process for students in receiving the scholarship: students must either be “assessed for continued eligibility” by a) the local Education Authority to determine if the child is still a child with a disability under IDEA, OR b) by a licensed psychologist with a school psychology focus who shall assess whether the non-public school has improved the student’s educational performance and the student would benefit from continuing to attend the non-public school.

Additional Provisions of Interest

Medical Tax Deduction: This budget fully restores the Medical Tax Deduction that existed prior to the Tax Simplification Laws of 2013. Individuals and families who lack insurance coverage or whose autism therapy and related medical costs are not entirely covered by insurance may benefit from this state tax deduction. (See your tax professional for more information about tax deductions.)

Single-Case Agreements: LME/MCOS can contract with out-of-network providers of developmental disability, mental health, or addiction services. This provision allows for a more simplified contracting process for providers outside the catchment area for up to two cases per provider. (Inpatient providers are allowed up to five cases). Advocates hope that the expansion of out-of-network agreements will allow people to move from one LME/MCO catchment areas to another without a break in needed services as well as ensure access to specialty providers in areas where they are limited.

Overnight Respite: A pilot program will expand statewide so that adult day-care and adult day health-care facilities can provide overnight respite under new licensure rules. The new rules should allow overnight respite to be incorporated into Innovations/CAP waiver amendments and will not require additional legislative approval before submission to the federal government for approval.

What’s missing from the budget?

The biggest gaps in the system for people with autism and other intellectual and developmental disabilities were not addressed. There are 12,000 people on waiting lists for services and supports, including Innovations waivers through our LME/MCO system. This budget does not address funding for the 3,000 slots for support waivers that were to be created for those waiting for help. While the Centers for Medicare & Medicaid Services now require states to provide behavioral services to children with autism under Early and Periodic Screening, Diagnostic, and Treatment (EPSDT), no new funds were added to the Medicaid budget to address this need. With LME/MCOs capitation rates remaining the same, it’s not clear how they will pay for an increase in services such as adaptive behavior treatment to address core autism behavior challenges.

Earlier versions of the budget included a proposal for a case-management pilot program, which was not included in the final budget. Case management is critical for people dealing with complex medical, developmental, and disability issues.

As mentioned above, there are no increases in special education funding or plans for alternatives to the 12.5% cap on funding. Students with disabilities who want to access the non-public school scholarships will wait for more funds to be put into the scholarship program.

The legislature is requiring LME/MCOs to swap state funds for their fund balances for two years in a row. This removes savings intended to expand services and could cut services in the second year.

The 2016 short session, which begins at the end of April, is the next opportunity to make adjustments to the state budget. ASNC will continue working with legislators to address gaps in services.

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.