Join Our Campaign for Acceptance

A2A-logo

Join us this April as we again focus on acceptance and inclusion, not just awareness, for National Autism Awareness Month. The #A2AforAutism campaign to move communities from Awareness “2” Acceptance, started some conversations last year, and we can’t wait to see how it builds this year.

We want people with autism, and their families, to feel welcomed in their communities. We want people to know about autism’s challenges, so they can be more accommodating. But we also want them to know how their lives can be better when they include people with autism.

How can you help share this message and move your communities from Awareness “2” Acceptance? Here are some ideas:

  • Use the hashtag #A2AforAutismeverywhere: Facebook, Twitter, Instagram, Pinterest!
    • Share photos of autism awareness events that you attend.
    • Share pics or videos of your child with autism playing with neighborhood friends. Or, if you have a neurotypical child, them with their friends with autism. (Remember to get parents’ permission for sharing on social media.)
    • Share photos, videos, or stories of your loved ones with autism that show off their unique talents.
    • Share stories of inclusion.
    • Always remember the #A2AforAutism, so we can share your images, too.
  • Share ASNC’s social media posts throughout the month.
  • Join us for World Autism Awareness and Acceptance Day on Sunday, April 2, at Camp Royall near Pittsboro.
  • Wear the #A2AforAutism T-shirt as often as you can wash it. (Don’t have one? Buy one from the ASNC Bookstore)
  • Put an #A2AforAutism magneton your vehicle (Also available from the Bookstore)
  • Tell teachers, club leaders, faith communities, etc., about our online materials that can help them create acceptance in their communities. The free resources include videos, informational items, ideas for crafts and fundraisers, and more.
  • Ask to provide a presentation or displayon acceptance in your clubs, schools, faith communities, etc. You can find ideas on our website or the ASNC Communications Department can help you with materials.

Imagine what acceptance could do for our loved ones with autism. We thank you for your efforts throughout April!

 

ASNC Day on the Hill

 

capitol-hill

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.

 

 

 

NC ABLE Program Starts January 26

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

Beginning Thursday, January 26, people with disabilities and their families can save and invest without losing means-tested benefits. ABLE accounts are affordable, tax-advantaged accounts that allow eligible individuals with physical or cognitive disabilities that occurred before the age of 26 to save up to $14,000 per year without interfering with certain means-tested federal and state benefits programs, including Medicaid and Supplemental Security Income (SSI). Accounts can be opened by the person with a disability as well as parents or guardians on behalf of qualifying individuals with disabilities.

Funds in an ABLE account can be used to pay for “qualified disability expenses” (QDEs), including rent and housing, transportation, educational needs, employment training and supports, assistive technology, health care and therapies, and other approved expenses.

North Carolina has joined the National ABLE Alliance, a group of 14 states that united to offer high-quality ABLE accounts at a reasonable cost. NC ABLE accounts are open to eligible individuals across the country for a fee of $45 per year. They carry no enrollment fees or minimum startup balances, and you can manage funds through an online portal.

Staring March 31, NC ABLE will also offer a program debit card and checking option that gives people a quick and easy way to pay for QDEs from their ABLE account’s funds.

Below is more information from the Autism Society of North Carolina about ABLE and NC’s program.

For all of the details, go directly to the website of the NC Office of the State Treasurer’s ABLE information page.

To sign up, go to NC.SaveWithABLE.com starting Thursday, January 26. (The page will not be active until then.) Accounts are opened online only at this time.

 

What You Should Know About ABLE Accounts

One account per individual with a disability

Parents can open on behalf of minor children. Guardians can open on behalf of eligible individuals for whom they have guardianship.

At this time, existing 529 college savings plans cannot be rolled over into ABLE accounts.

Please be aware, if an individual with an ABLE account passes away, the state or federal government may require money in an ABLE account be used to repay the government for services provided by Medicaid.

There is a flat fee of $45 per year. One-fourth of the $45 is taken out of the account each quarter over the year.

For investment account options, additional fees will apply (as with other types of investment accounts). Please see NC.SaveWithABLE.com or a financial planner for information about how investment fees are calculated.

ABLE accounts are NOT a replacement for special-needs trusts. Trusts may have other advantages for an individual or family. An individual can have a trust and an ABLE account. If you have an existing trust or need to invest or save more than $14,000 per year, please see a financial planner to discuss your options.

Be aware: Money goes into the account after tax. The distribution of funds is tax-free for qualifying expenses.

 

Eligibility

The law says those eligible have a “medically determinable physical or mental impairment” that occurred before the age of 26. This includes intellectual and/or developmental disabilities, autism, brain injuries before age 26, and other conditions.

The onset must be before the age of 26, but not necessarily the diagnosis. IDD conditions are generally present at birth or in early childhood even if diagnosed later.

Individuals can self-certify that they qualify to open an account. Keep in mind that if the IRS audits for use of an ABLE account, individuals must provide proof of their “medically determinable physical or mental impairment” before age 26. This typically means evidence of a diagnosis by a health-care professional, including mental/cognitive care professionals.

 

Signing Up

Only online signup will be available this week. Paper signup will be available at a later time.

Signup for investment accounts will start January 26.

Signup for debit cards and “checking” type accounts will be an option after March 31. If you plan to move money in and out of the account to pay for weekly or monthly expenses, a debit or checking option may be best. There are no additional fees for debit and checking options. Debit cards will be able to withdraw funds through Allpoints ATMs as well. See NC.SaveWithABLE.com for more info.

Customer-service staff can assist with online signup.

Paper statements can be requested; the default for accounts is electronic delivery of account statements.

 

Contributions and Income

Contributions can be one-time, recurring, or from payroll deposit.

Investment account options are typically for long-term needs and large one-time expenses and debit/checking for ongoing or recurring expenses. Debit cards/checking can be used to pay for one-time or recurring expenses. You will determine what works best for you.

Funds can be moved based on the current needs of the individual. Funds can be pulled from investment or debit/checking accounts for QDEs, though the process may be different.

ABLE accounts cannot be used to “hide” income. Gifts, earned income from work, and Social Security payments to the individual are considered income. An ABLE account can help a person save up to $14,000 per year (up to $100,000) with tax advantages while setting those ABLE funds aside when benefits programs take into account what the person has in savings.

Money earned by or given to the person is still considered income. Families who want to gift to the person with an ABLE account should direct those funds to the ABLE account. NC ABLE will issue “coupons” and instructions on how to do so.

There are other programs that people with disabilities can use if they are earning income. Medicaid allows someone to “buy into” their Medicaid benefits if they work and earn too much income. See NC DMA for more information.

 

Certifying Qualified Disability Expenses (QDEs)

It is up to the account-holder and/or their guardian to track their QDEs.

The NC ABLE program will not require individuals to certify their QDEs. This means you will not have to submit proof of expenses on a monthly or yearly basis.

HOWEVER, the IRS is likely to audit some percentage of ABLE account-holders as part of assuring that the program is being used appropriately. ABLE account-holders and/or their guardians should keep records of expenses in case of an IRS audit.

Accounts are tax-free as long as they are used for QDEs. If not, the IRS may recoup taxes from account-holders.

QDEs are determined by federal regulations and may be subject to change over time. The list maintained by the IRS for their auditing purposes is available on the NC ABLE website.

 

Who “Owns” the Account?

Under 18: the parent or guardian owns the account.

Over 18: the individual account-holder (person with the disability) owns the account.

Over 18, but under some form of guardianship: the account is still owned by the individual with the disability, but the account is controlled by the legal guardian or person with power of attorney.

There are options to monitor the accounts without having access. Please see NC.SaveWithABLE.com for more info.

 

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

Staying Safe: ASNC Can Help

As parents, we do all we can to make sure that our children understand how to remain safe. What’s “stranger danger”? How do you cross the road safely? How do you ask for help when you get lost or separated? But if your child has autism, you may face additional challenges, such as wandering (also called elopement, bolting, or running).

In a study published by the journal Pediatrics, 49 percent – almost half – of families reported that their child with autism had attempted to elope at least once after age 4. While they were missing, 24 percent of those children were in danger of drowning, and 65 percent were in danger of being hurt in traffic. No one wants to see a tragic outcome for kids who wander.

 

Online resources

If you have a child who is a “runner,” we have free information and tools that can help.

  • Download our tips sheet on wandering prevention that offers practical ways to help your child understand safety issues and inform authorities about their needs and interests.
  • Print and complete the Personal Information Record sheet and share it with law enforcement, your 911 center, and other first-responder agencies. This can help them identify your child and understand how to interact effectively with them.
  • Request our free ID cards that can be laminated and teach your child how to carry one to share with a first responder.
  • Order our Person with Autism decals for your car and home that help first responders recognize that occupants might not respond in a typical manner.

Prevention tips

  • Do not isolate yourself: Share and explain autism to your neighbors, family and friends. Share your contact info and ask whether they would be willing to help look if your child wanders. Keep a list of those who say yes.
  • Meet your first responders: Take your child to the fire station, police station, and EMS. Share the personal information record with them and introduce your child. This helps your child and the first responders.
  • Secure your home: Consider ways to keep your home secure. Examples include a home security system, window locks, door alerts, etc.  If your yard is not fenced, you may want to consider that as an option for keeping your child from wandering. If you own a pool, make sure it’s not accessible without adult supervision.
  • Working with schools and day cares: Share any concerns about wandering with your child’s teachers. Let them know what you want them to do if your child wanders and make safety goals part of your child’s IEP.
  • Teaching your child: Demonstrate and help your child learn safety skills such as what road signs mean, how to cross a street safely, and how to read traffic lights. Identify safe places (such as fire or police stations) in your neighborhood and practice going to them and waiting for help or an adult. Use visual or written cues to teach what to do in different situations, and practice sharing contact information. Teach children who are nonverbal how to carry and show an ID card.
  • Attend one of our workshops: We offer a workshop called “Staying Two Steps Ahead: Safety Considerations for Caregivers.” We will next offer it as a webinar on March 13. Register now.

 

We all want our children to grow up safely. Please contact an ASNC Autism Resource Specialist near you for additional information and resources on this important topic.

Sensory-Friendly Activities Ease Winter Blues

grinch3

“Oh, the weather outside is frightful…”

In these long winter months, many NC families are looking for indoor entertainment. It’s too cold to jump on the backyard trampoline, too icy to run at the park. Many will turn to indoor play areas, shows, and movies.

But these are not always good options for families who have loved ones with autism. Individuals with autism often are sensitive to sensory stimuli, and they may react in ways that are not typical, which can lead to judgment by others. They need a flexible and accepting environment so they can enjoy the activity.

grinch-2

See a photo story from DPAC’s “Grinch”: https://spark.adobe.com/page/NBM0fNDJ6NbTF/

Fortunately, more and more businesses and organizations are offering “sensory-friendly” options so individuals with autism and their families can enjoy the same activities as other families. An example last month was the “Dr. Seuss’ How the Grinch Stole Christmas! The Musical” at Durham Performing Arts Center, made possible by sponsors Duke Health and SunTrust. DPAC’s special matinee included adjustments to the production, including fewer loud noises and flashing lights; designated quiet sections; and volunteers to assist families.

The showing was a great success and much appreciated by area families. One parent wrote, “Thank you so much for this special show! My 6-year-old son had the best time of his life. It was such a relief to be in a theater and know your child can feel free to be who he is, without having to worry. He laughed, sang, spent some time in the aisle, and wasn’t overwhelmed by the lights or sounds (as he sometimes is).”

grinch 1.jpgAnother said, “I cannot thank you enough for today’s performance. Hundreds of families in our community went to the theater today that would have otherwise not considered it. When you have a special needs child, it is hard to get out of the house sometimes. It is hard to spend money on events that you may have to walk out of within minutes if your child’s behavior isn’t in line with norms. Today, DPAC gave us a welcoming environment. We enjoyed a show and felt the support of DPAC staff and the other families surrounding us. Children around me were laughing and cheering.”

We thank DPAC, Duke Health, and SunTrust for making this experience possible for our families!

Find activities near you

Some movie theaters in NC now offer sensory-friendly shows; check with your local theater. AMC Theatres offers them in the Charlotte and Triangle areas, saying “we turn the lights up, and turn the sound down, so you can get up, dance, walk, shout or sing! Our Sensory Friendly Film program is available on the second and fourth Saturday (family-friendly) and Tuesday evenings (mature audiences) of every month.” Check their website for more information.

ASNC Chapters are another great resource for sensory-friendly activities as well as social events that are family-friendly with a welcoming atmosphere. A few examples:

Find events on our calendar; find a Chapter near you on our website.

And finally, be sure to join ASNC’s Facebook group, where events and activities from around the state are posted.

Looking for a Place to Belong? Join an ASNC Chapter

pender-pizza-and-pool-2

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.

lumberton-faith-workshop

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.

 

Q&A with Dr. Jed Baker, Autism Expert

 

jed-baker

On Friday, November 4, Dr. Jed Baker will lead a daylong conference that touches on two very important topics for families and caregivers: managing frustration and anxiety and teaching social skills. Dr. Baker graciously shared some insights and previewed his talk in a Q&A recently.

 

Why is it important for caregivers to think about managing their frustration and anxiety levels when interacting or working with their child or student?

We fight fire with water. To respond intelligently and with understanding to a challenging situation requires us to manage our own emotions as caregivers. Our own reactivity can hijack our better judgment and escalate the problem rather than resolve the issue.

Everyone experiences anxiety and frustration. How does the experience differ for those on the autism spectrum?

Social perception, sensory, language, and learning issues can make many situations more confusing, unexpected, and frustrating to those with autism. Difficulty transcending the moment can make a temporary problem, like not getting to play a videogame, seem like a life-threatening crisis.

You provide concrete strategies that address anxiety and frustration in caregivers and children with autism spectrum disorder. Can you provide a preview of one example?

Preventing frustration depends on understanding how an individual perceives a difficult situation. For example, not getting to do a desired activity can seem like an unbearable issue. Providing a timer or visual schedule can help an individual know he will get what he wants, allowing him to wait more calmly.

As another example, anxiety about confusing classwork can make kids feel ashamed and afraid to try. Learning how to undo the shame of asking for help and disentangling it from judgments about intelligence can free students to more calmly approach challenging work in an effort to grow.

The conference also addresses social skills, including skill acquisition and motivation to use social skills. What’s the difference?

Acquisition strategies refer to ways to teach skills. We need to pick strategies that match an individual’s language ability. Teaching a skill does not ensure the individual wants to learn or use the skill. Motivation refers to “what’s in it for the individual” to learn and use the skill. Sometimes we use external rewards like favored activities or objects as rewards for using a social skill. Yet more importantly for motivating socializing are natural rewards like wanting a friend or making the interaction so much fun the individual wants to interact.

The social skills portion of the day also spends time focusing on peer interactions, creating acceptance, and reducing bullying. Why are these three things so important?

Socializing is a two-way street. We cannot try just to get those with ASD to fit in but also to get others to reach out. And all students have a right to a safe and accepting environment. One key to anti-bullying is to empower the peer community to police itself with upstanding peers.

Want to learn more? Join us on November 4 in Raleigh. To learn more about the conference and register, click here. The ASNC Bookstore will also be at the event with Dr. Baker’s numerous books. Register soon; the early bird price is valid through midnight October 16.