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.

Looking for a Place to Belong? Join an ASNC Chapter

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Pender County Chapter

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

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

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Robeson County Chapter

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

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

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

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

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

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

 

Share Your Public Policy Priorities

 

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

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

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

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

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

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

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

Recognize Your ASNC Direct Support Professional

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

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Tyler and his DSP, Carey Bowman of ASNC

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

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

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

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

Listen to what some parents have said about their DSPs:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

Register today: www.trianglerunwalkforautism.com

Gavin’s Gang Walks for Resources and Awareness

 

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

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

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

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

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

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

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

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

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

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

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

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

 

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

Register today: www.greensbororunwalkforautism.com