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.

ABLE Accounts Coming in Early 2017

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

Individuals with developmental disabilities and their families have been eagerly anticipating the availability of ABLE savings accounts, which allow a person with a disability to save for critical expenses while still allowing eligibility for means-tested disability supports and health care. North Carolina has looked at the options and resources available to operate an ABLE account program and has determined that the best approach is to join a consortium of other states to keep costs lower and still provide good value and customer service for account-holders.

Under this consortium of states, ABLE accounts should start to become available in early 2017, according to information presented to advocates from the ABLE Board of Trustees and the NC Department of the State Treasurer. This statement presented at the last NC ABLE Board of Trustees meeting outlines the board’s decision to participate in the 11-state group. You can learn more about ABLE accounts and sign up for information at the NC Department of the State Treasurer.

With recent changes to federal law, you are no longer required to open an account in the state where the individual with the disability resides; you can open an account in any state that offers them! The Arc of the US is tracking ABLE implementation and which states are operating accounts; see the results here. Please note that some states may be offering accounts only to state residents, an individual can have only one account at a time, and fees may apply for accounts to be rolled over into new accounts should you want to move them to another state later.

 

Background

In August of 2015, legislation authorizing ABLE accounts passed the General Assembly and was signed into law by the governor. The Achieving a Better Life Experience (ABLE) Act, a federal law signed in December 2014, will give many individuals with disabilities, including those on the autism spectrum, and their families the opportunity to save for the future and fund essential expenses such as medical and dental care, education, community-based supports, employment training, assistive technology, housing, and transportation. The law allows eligible individuals with disabilities to create “ABLE accounts” that resemble the qualified tuition programs, often called “529 accounts,” that have been established under that section of the tax code since 1996.

By saving for and funding critical daily expenses, ABLE accounts will give North Carolinians with disabilities increased choice, independence, and opportunities to participate more fully within their communities. Without these accounts, people with disabilities have very limited ways to save, and any savings may prevent them from accessing other needed programs and services.

Key Characteristics of ABLE Accounts

  • An eligible individual may have one ABLE account, which can be established in any state that offers ABLE accounts.
  • Any person, such as a family member, friend, or the person with a disability, may contribute to an ABLE account for an eligible beneficiary.
  • An ABLE account may not receive annual contributions exceeding the annual gift-tax exemption ($14,000 in 2016). A state must also ensure that aggregate contributions to an ABLE account do not exceed the state-based limits for 529 accounts.
  • ABLE accounts are investment savings accounts and monthly fees are typically charged for account management. Compare fees and services across states before choosing where to open an ABLE account.
  • An eligible individual is a person (1) who is entitled to benefits on the basis of disability or blindness under the Supplemental Security Income (SSI) program or under the Social Security disability, retirement, and survivors program OR (2) who submits certification that meets the criteria for a disability certification (to be further defined in regulations). An eligible individual’s disability must have occurred before the age 26.
  • Qualified disability expenses are any expenses made for the benefit of the designated beneficiary and related to his/her disability, including: education, housing, transportation, employment training and support, assistive technology and personal support services, health, prevention and wellness, financial management and administrative services, legal fees, expenses for oversight and monitoring, funeral and burial expenses, and other expenses, which are approved by the Secretary of the Treasury under regulations.
  • Tax treatment: Earnings on an ABLE account and distributions from the account for qualified disability expenses do not count as taxable income of the contributor or the eligible beneficiary for purposes of federal tax returns. Contributions to an ABLE account must be made in cash from the contributors’ after-tax income.
  • Rollovers: Assets in an ABLE account may be rolled over without penalty into another ABLE account for either the designated beneficiary (such as when moving to another state) or any beneficiary’s qualifying family members. At this time, college savings 529 accounts cannot be rolled over into ABLE accounts.

 

Federal Treatment of ABLE Account under Means-Tested Programs, Including Supplemental Security Income and Medicaid

  • Means-Tested Programs: Assets in an ABLE account and distributions from the account for qualified disability expenses would be disregarded when determining the designated beneficiary’s eligibility for most federal means-tested benefits.
  • Supplemental Security Income (SSI): For SSI, only the first $100,000 in an ABLE account will be disregarded. Assets above $100,000 will count as resources under SSI. If the designated beneficiary’s ABLE account balance exceeds $100,000, the individual’s SSI benefits will not be terminated, but instead suspended until the individual’s resources fall below $100,000. It is intended that distributions expended for housing will receive the same treatment as all housing costs paid by outside sources.
  • Medicaid Eligibility: A beneficiary will not lose eligibility for Medicaid based on the assets held in an ABLE account, even during the time that SSI benefits are suspended (as described above for an account over $100,000).
  • Medicaid Payback Provision: Subject to certain limits and upon a state’s filing of a claim for payment, any assets remaining in an ABLE account upon the death of the qualified beneficiary must be used to reimburse the state for Medicaid payments it made on behalf of the beneficiary. The amount of Medicaid payback is calculated based on amounts paid by the beneficiary as premiums to a Medicaid buy-in program.

 

The Autism Society of North Carolina has supported the development of ABLE accounts, which will be another tool that families and individuals can use to create opportunities to enhance their lives. We will provide information to the public about how to access them as it becomes available. Please check the ASNC blog, website, and social media outlets for updated information and other helpful resources.

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.

General Assembly Approves ABLE Accounts for NC Families

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

On Monday, Aug. 3, The General Assembly approved legislation authorizing ABLE accounts in North Carolina; Gov. Pat McCrory is expected to sign the bill into law. The Achieving a Better Life Experience (ABLE) Act, a federal law signed in December 2014, will give many individuals with disabilities, including those on the autism spectrum, and their families the opportunity to save for the future and fund essential expenses such as medical and dental care, education, community-based supports, employment training, assistive technology, housing, and transportation. The law allows eligible individuals with disabilities to create “ABLE accounts” that resemble the qualified tuition programs, often called “529 accounts,” that have been established under that section of the tax code since 1996.

By saving for and funding critical daily expenses, these ABLE accounts will give North Carolinians with disabilities increased choice, independence, and opportunities to participate more fully within their communities. Without these accounts, people with disabilities have very limited ways to save, and any savings may prevent them from accessing other needed programs and services.

Key Characteristics of ABLE Accounts

  • An eligible individual may have one ABLE account, which must be established in the state in which he resides (or in a state that provides ABLE account services for his home state).
  • Any person, such as a family member, friend, or the person with a disability, may contribute to an ABLE account for an eligible beneficiary.
  • An ABLE account may not receive annual contributions exceeding the annual gift-tax exemption ($14,000 in 2015). A state must also ensure that aggregate contributions to an ABLE account do not exceed the state-based limits for 529 accounts.
  • An eligible individual is a person (1) who is entitled to benefits on the basis of disability or blindness under the Supplemental Security Income (SSI) program or under the Social Security disability, retirement, and survivors program OR (2) who submits certification that meets the criteria for a disability certification (to be further defined in regulations). An eligible individual’s disability must have occurred before the age 26.
  • Qualified disability expenses are any expenses made for the benefit of the designated beneficiary and related to his/her disability, including: education, housing, transportation, employment training and support, assistive technology and personal support services, health, prevention and wellness, financial management and administrative services, legal fees, expenses for oversight and monitoring, funeral and burial expenses, and other expenses, which are approved by the Secretary of the Treasury.
  • Tax treatment: Earnings on an ABLE account and distributions from the account for qualified disability expenses do not count as taxable income of the contributor or the eligible beneficiary for purposes of federal tax returns. Contributions to an ABLE account must be made in cash from the contributors’ after-tax income.
  • Rollovers: Assets in an ABLE account may be rolled over without penalty into another ABLE account for either the designated beneficiary (such as when moving to another state) or any beneficiary’s qualifying family members.

 Federal Treatment of ABLE Account under Means-Tested Programs

  • Means-Tested Programs: Assets in an ABLE account and distributions from the account for qualified disability expenses would be disregarded when determining the designated beneficiary’s eligibility for most federal means-tested benefits.
  • Supplemental Security Income (SSI): For SSI, only the first $100,000 in an ABLE account will be disregarded. Assets above $100,000 will count as resources under SSI. If the designated beneficiary’s ABLE account balance exceeds $100,000, the individual’s SSI benefits will not be terminated, but instead suspended until the individual’s resources fall below $100,000. It is intended that distributions expended for housing will receive the same treatment as all housing costs paid by outside sources.
  • Medicaid Eligibility: A beneficiary will not lose eligibility for Medicaid based on the assets held in an ABLE account, even during the time that SSI benefits are suspended (as described above for an account over $100,000).
  • Medicaid Payback Provision: Subject to certain limits and upon a state’s filing of a claim for payment, any assets remaining in an ABLE account upon the death of the qualified beneficiary must be used to reimburse the state for Medicaid payments it made on behalf of the beneficiary. The amount of Medicaid payback is calculated based on amounts paid by the beneficiary as premiums to a Medicaid buy-in program.

How Soon will ABLE Accounts be Available?

  • Federal Regulations: The Secretary of the Treasury issued draft regulations on June 22 that are up for public comment until September 21. A public hearing will follow on October 14. Final rules will be issued after that.
  • State decisions: Each state must decide whether to offer a qualified ABLE program to its residents. States offering ABLE accounts must then decide whether to have the state itself run the program, to select another entity to run it, or to contract with another state to allow residents to use that state’s program.
  • North Carolina: The House and Senate have both put funding to administer the ABLE program in their budgets. The NC legislation states that accounts would be available once the NC Office of the Treasurer has the program up and running and federal regulations are set for ABLE accounts. While no specific time is set, we hope that accounts would be available in 2017.

The Autism Society of North Carolina has supported the development of ABLE accounts, which will be another tool that families and individuals can use to create opportunities to enhance their lives. We will provide information to the public about how to access them as it becomes available. Please check our blog, website, and social media outlets for updated information and other helpful resources.

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. ASNC believes in the importance of public policy advocacy to enhance the lives of people on the autism spectrum and their families. Please see our website for more information on public policy issues and how you can get involved.

We thank The Arc of NC for support in writing this article. ASNC has been proud to partner with The Arc of NC in support of efforts to increase asset building, promote independent living, and create more access to services and supports. You can read more about The Arc of NC’s public policy efforts on their website, www.arcnc.org.

 

A look back at a remarkable year

looking-backA few highlights from 2013

2013 was a busy year in the autism community. We witnessed the changeover in statewide service delivery from Local Management Entities (LMEs) to Managed Care Organizations (MCOs). Issues that had stalled for years with the legislature moved forward, but not all the way into law. And more families learned that they have a member on the autism spectrum. All in all, it was a significant year, and we would like to highlight just a few items as the year draws to a close.

Medicaid Waiver Transition
Many families receive funding for services through Medicaid in our state. Many more are eligible and are waiting for services. The first quarter of the year saw a change in service delivery that consolidated 22 LMEs down to 10 MCOs. The transition had some rough spots, and the Autism Society of North Carolina (ASNC) continues to work with MCO staff and families to advocate for improvements to the system and expansion of services to more individuals with autism.

Autism Insurance (House Bill 498)
For over five years, ASNC has worked with parents, professionals, and a coalition of other autism organizations to educate lawmakers about the impact that insurance coverage for autism would have in our state. These efforts resulted in an incredible 48 hours of activity in May. During those 48 hours, HB 498 was discussed and approved by the House Insurance Committee and the Appropriations Committee, and then passed the full House by a 105-7 margin. This moved the bill to the NC Senate, where if approved it would proceed to the governor. As the legislative session drew to a close, HB 498 was not given a hearing by the Senate, but it remains alive, and we expect the Senate to take this up at the start of the 2014 short session.

Expanding Services
Along with the waiver transition, many providers of services either scaled back their caseload, or in some cases, ceased operations. The Autism Society of North Carolina has worked to continue high-quality services and expand the regions in which we are able to offer them. These efforts included hiring a Services Coordinator and opening a new office in Charlotte. Now families in that area of the state will be able to access additional services from the organization. View the Autism Society of North Carolina services offices here.

Connecting with and Helping Self-Advocates and Families
This is the core of what we do, and during 2013, the Autism Society of North Carolina assisted thousands of individuals on the autism spectrum and their families through our Autism Resource Specialists, chapters, and support groups. Autism Resource Specialists (formerly Parent Advocates) cover all 100 counties and assist with information and referral, school issues, parent training, and community education. If you have not tapped into their expertise, please make sure to connect in 2014.

Celebrating and Accepting
On April 2, more than 500 people traveled to Camp Royall to celebrate World Autism Awareness Day (WAAD). This was the first ASNC attempt to have a public event in recognition of this day, and we were blown away by the response. Families traveled from as far away as Charlotte, Asheville, and the coast to enjoy fellowship, food, and fun with the variety of activities the camp offers. Camp Royall not only hosted WAAD, but also provided summer camp for over 350 individuals and served 900 more during year-round programming. 2013 marked the 42nd consecutive year that ASNC has offered a summer camp, the longest running summer camp program for individuals with ASD in the nation. Our community also celebrated awareness and acceptance at our Run/Walk for Autism events throughout the state. From the mountains to the sea, thousands of families and community members came together to walk, run, volunteer, and raise money to support each other and ASNC. More than $500,000 was raised through these events – a new record. What an accomplishment.

Collaboration and Community
Everything we do is related to providing support to and increasing opportunities that enhance the lives of individuals on the autism spectrum and their families. These principles guided us when the founders started the organization almost 44 years ago, and they still guide us today. Parent and professional collaboration is the key to promoting understanding and acceptance, and for your support – whether you have donated to the organization, written an email to a legislator, shared our website address or phone number with a family in need, or volunteered your time – we say THANK YOU. All of the above would not have happened without your involvement.

Best wishes for the New Year!

Sincerely,
David Laxton
Director of Communications