Supported Employment Brings Fulfillment

2014-11-07-adamricci-003-terry-hamletEditor’s note: This article previously appeared in ASNC’s Spectrum magazine.

David Roth’s parents never have to wake him up in the morning or push him to get out the door on time for his job. The 27-year-old with autism works at the Courtyard in Chapel Hill, mostly in the fast-paced, physically demanding laundry, but he is always happy to go.

“He loves to work. He absolutely loves it,” said his mother, Susan Roth.

David started working at the hotel when he was still in high school. It was a volunteer position, facilitated through East Chapel Hill High School, where the young man was having some behavioral issues when he was made to do things he did not want to do. “He was absolutely the happiest when he was out in the community and especially when he was at his job,” Susan said.

Now, almost a decade later, David holds a paying position at the Courtyard along with two other part-time jobs, with the support of an employment supports instructor from the Autism Society of North Carolina (ASNC). His mother says the jobs have helped him learn how to interact with other people, provided the consistent schedule that he needs, and given him pride and a sense of accomplishment. They have even improved his reading skills because he is interested in reading about his job duties as opposed to school topics.

Lorraine La Pointe’s 25-year-old son with autism, Adam Ricci, also holds several part-time jobs. She says they have “opened up his circle”; when she is with him in the community, he always sees someone he knows. She also noticed that Adam has recently matured. “I think it really has changed him.”

Kathryn Lane, who is Adam’s employment supports instructor through ASNC, agrees, saying that Adam is calmer on the job than at other times. Having a job has also taught him responsibility as it requires him to be punctual, have clean, neat clothing, and manage his time as he completes tasks, she said.

“Seeing the progress is really rewarding for me,” Kathryn said. “The goal is to make him independent someday.”

For individuals with Autism Spectrum Disorder (ASD), meaningful employment is a key part of a fulfilling life, but studies have shown that as many as eight out of 10 are unemployed or underemployed. David Ingram, ASNC Employment Supports Director, said that individuals with ASD improve their odds of obtaining integrated employment 400% through using job placement services from an organization such as ASNC while using Vocational Rehabilitation supports.

Businesses giving back

2014-11-07-adamricci-004From the employers’ viewpoint, providing job opportunities for individuals with autism is a win-win situation.

“The benefits that we have with David … it actually keeps us humble, grounded, and grateful,” said Lisa Giannini-White, the Director of Operations of Southpoint Animal Hospital in Durham, where David Roth works in the afternoons. “We thoroughly enjoy having David here.”

Terry Hamlet is President of S.H. Basnight and Sons, a small Hillsborough company that makes specialty hardware, doors, and frames. Terry said she and her employees benefit from working with Adam and another employee with autism. “I think that at the core of each person, they like the idea of doing something for other people. I think that in some way, that is happening here,” Terry said. “Hopefully they can feel good about the fact that they work for people who care enough about other people to give them an opportunity.”

Lisa said it was a part of Southpoint Animal Hospital’s original business plan to “offer opportunities to everybody.” Before David came to work for them, she did research about how to support individuals with autism and also consulted with his father about David in particular. When she talked to her employees about bringing David on, they were all for it, she said, and so she shared what she had learned.

Valued employees

But it’s not just about a feeling they are doing good; David is a valued employee, a consistent team player with great attention to detail, Lisa said. “He helps others see that well, gosh, I guess I could be more detailed, or I guess I could be a little bit of a harder worker.”

Alex Griffin also brings strong attention to detail to his position at the Center for Urban Affairs and Community Services (CUACS) at NC State University. Alex, a 30-year-old with high-functioning autism, does not need the assistance of an employment supports instructor, but he did participate in ASNC’s JobTIPS program, which emphasizes the development of social skills that are critical to identifying, applying for, securing, and maintaining employment. The group facilitator provides coaching and feedback for job interviews, encourages peer interaction, and helps members develop a broader community network.

Sheila Brown, Alex’s supervisor, said he does not really need supports at CUACS and performs well in a variety of duties. “He’s got a great attitude, and everything he’s done for us he’s done very well, very thoroughly,” she said. The reviews of assessments and testing that their work group do can be tedious and require a lot of attention, and Alex has found things they might have missed, she said. He also is very responsive to feedback and happy to do anything that is asked of him.

Alex said he would like all employers to know that “our value as employees isn’t overshadowed by the minor cost of accommodation.”

David Ingram said, “Individuals with disabilities, including ASD, experience less turnover than nondisabled individuals, allow access to numerous tax incentives, and return an average of $28.69 for each dollar invested in accommodations. Individuals with disabilities and their networks represent a $3 trillion market segment, and 87% of customers prefer to patronize businesses that hire employees with disabilities. I’m excited to see businesses starting to understand the value in hiring workers on the autism spectrum and contact us seeking support in placing someone with ASD with their corporation.”

Supporting the workers

2014-11-07-adamricci-007S.H. Basnight and Sons’ employees with autism are productive parts of the business because Terry matched tasks that the company needed to have done with their skills, just as she would with any employee, she said. Having patience and teaching how to complete tasks properly is necessary with any worker, she said. “There is no employee ever that is totally easy. The key is to work with people to help them do things correctly.”

“It’s very important for everybody – it’s important with our children, it’s important with our co-workers, it’s important in our businesses – when there is a weakness, to help that person develop that.”

Adam’s mother, Lorraine La Pointe, said Basnight has done an “amazing” job of supporting him. “They are just naturals. He operates on a visual schedule, and they have magnetic boards set up for his tasks. They are just on it.”

The visual task boards give Adam the opportunity to choose the order in which they will do the tasks for that day as well the independence to move from one task to another, Terry said. At Southpoint Animal Hospital, Lisa also set up visual supports for David, such as laminated sheets showing his duties in the restrooms.

Terry also said that employment supports instructors are a key to success for individuals with autism. With the job coaches supporting their clients well, there is more potential for growth in the job. Kathryn Lane, who has worked with Adam since July, said she has seen that; he has started recognizing more details at his job and times that tasks were not done correctly.

Part of the team

For employees without onsite support staff, many issues can be avoided with just a little research about autism and the employee in particular, said Sheila Brown, Alex Griffin’s supervisor at NC State. “We tend to have a stereotypical picture of what autism is, but it’s really more what autism is not,” she said. “Just be open, trying to make sure that the person is comfortable with what you’re asking them to do until they feel a comfort level with you and your staff.”

Adam feels very comfortable with his Basnight co-workers and Terry Hamlet; when he sees her in public, he greets her with a hug. She said they strive to make him a part of their team. Adam’s mother said they have gone a step further, including him in parties for holidays and birthdays; “they treat him like family.”

Terry says the effort was worth it.

“My life and the life of our company is richer for having had them here. I really believe that.”

For more information about Employment Supports, please go to www.autismsociety-nc.org/employmentsupports

Advertisements

Acceptance is Best Vacation Memory

 

lacross family.jpg

This article was contributed by Nancy LaCross, ASNC Autism Resource Specialist in the Raleigh area.

This summer, our family went on an eight-day group tour of South Dakota, Wyoming, Montana, and Utah. We visited many beautiful sites: Yellowstone National Park, Old Faithful, Mammoth Hot Springs, Devils Tower, Mount Rushmore, Crazy Horse Memorial, The Little Big Horn Battlefield, Grand Teton National Park, Mormon Tabernacle, and more. Not only were the scenic views spectacular, but we also got to witness acceptance, which was heart-warming.

Our tour group was made up of me, my husband, my parents, our son Eric (who has autism, intellectual delays, and is 23 years old), our tour guide (Jeffrey), our motor coach driver (Ray), and 40 other passengers. Knowing that Eric is accustomed to having a predictable and daily visual schedule, it was intimidating to be on a bus with strangers, not knowing exactly where and when we would be stopping. These strangers knew nothing about our lives. What would happen if there was a meltdown and we needed to get away? In the past, we always drove separately just in case we needed a rapid getaway.

The trip began in Rapid City, SD. We had an evening kickoff meeting to get an overview of the itinerary and meet the tour guide. It was at this meeting that a friendly gentleman from New York, named Bill, came up to us and introduced himself. From that point on, he took an interest in our entire family. Eric isn’t much of a conversationalist, but thankfully Bill was more than happy to do most of the talking. Over the next few days, we encountered Bill many times on the motor coach, at stops, and at restaurants. Each time he would go out of his way to speak to Eric, call him by name, and give him a welcoming smile. Before long, everyone on the bus knew Eric by name and made him feel at ease. It was amazing to see that the acceptance and kindness of just one person had spread to the entire group.

It was fascinating to watch the social interactions on the trip in this natural setting. I had never said a word to anyone about his disability; I had not asked anyone to do anything. We hadn’t written an ISP or IEP goal to work on social skills. I didn’t have to secretly pay someone to include him. There was no insurance or co-pays. It was simply one person being accepting that had made all the difference. I have heard the phrase that it takes a village to raise a child, but prior to this trip, I frequently felt as if we were on our own island most of the time.

eric and driver.jpgOur tour guide, Jeffrey, who had been a classroom teacher, seemed to see educational opportunities for Eric and would offer him challenges. Though Eric was frequently reluctant, he would later push himself beyond his comfort zone. If our son hadn’t felt accepted by the group, he would never have gone beyond his comfort level.

How did Jeffrey challenge our son? Eric religiously shared a seat with me no matter where we would travel. Jeffrey was able to get Eric to share a seat with Dad, next sit by himself near us, and finally transition to the jump seat by the driver while the rest of the family was in the back. When Eric completed this leg of our trip and got out of the jump seat, Jeffrey made an announcement to the entire group about what a great job our co-pilot, Eric, had done. Everyone cheered and Eric was all smiles. (The others didn’t really know what a big deal this was, but I did. Just recently, we were at a Special Olympics bowling event and Eric couldn’t independently walk from the ball carousel to the bowling lane. I was the only parent holding her child’s hand at the event. In that particular setting, he was too afraid to independently walk just a few feet.)

At our last dinner as a group, Jeffrey came over to Eric and told him that he always has the youngest person in the group say a few words. He asked whether Eric would be comfortable doing it, and Eric said he would. I was shocked. The man of few words was going to stand up and address the entire group after we ate dinner. As folks were finishing their dessert, Jeffrey did a little recap of our adventure. Then he turned the floor over to Eric. Eric stood up, and though he needed some prompting to get started, he did thank Mom, Dad, Nana, and Papa for bringing him on the trip. Everyone cheered, and Eric’s NY friend was the most enthusiastic.

At that final dinner, other travelers also shared their favorite memories. I so desperately wanted to stand up and thank everyone for their acceptance, but I wasn’t as brave as Eric. My legs were weak, and the tears were welling in my eyes just at the thought. I stayed in my seat trying to reassure myself that I could do it, when suddenly the next person to stand was Bill. He started out by saying how he enjoyed spending time with his wife and listening to Jeffrey’s knowledgeable commentary. At this point, he paused, looked in our family’s direction, and said the best part about the trip was meeting his new friend, Eric. Bill had more to say, but my tears were streaming uncontrollably, and I never heard another word.

During my happy motherly moment, Eric instinctively handed me a napkin. (It wasn’t the first time he had seen my waterworks). After other passengers shared their memorable moments, there were hugs, handshakes, and final goodbyes. Bill asked whether he could get a picture with Eric, and others expressed how much they enjoyed meeting Eric. I had to excuse myself as the second wave of tears began streaming down my face. As my husband, Eric, and I dashed through the lobby to escape, Eric said, “Mom, here take my worry stone. I think you need it more than I do.” The tears now gushed even harder. Standing before me was this innocent man, my son with autism, who so quickly identified a way for me to self-soothe. On the inside, my mind was reflecting on the years before when he himself had trouble regulating his body, identifying when he was upset before a major meltdown, implementing ways to calm himself, us trying to teach him to use the Incredible 5-Point Scale, and the years of individual speech therapy to teach him to identify emotions and feeling.

One person really can make a difference. Let’s all spread acceptance and embrace the abilities of others.

 

Nancy LaCross can be contacted at nlacross@autismsociety-nc.org or 919-865-5093.

The Incredible 5 Point Scale and many other quality resources are available in the ASNC Bookstore at www.autismbookstore.com.

 

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

mile3 square.jpg

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

ASNC Trains Police to Understand Autism

On July 18, Arnaldo Eliud Rios Soto, 26, wandered away from his group home in Miami. Charles Kinsey, his behavioral therapist, came after him and attempted to calm him. Police were called in when someone mistook a toy truck held by Rios for a gun and called 911 thinking he was suicidal. Police shot Kinsey in the leg. They said that was a mistake, and that the officer was aiming at Rios, who was still holding the truck. The officer thought Rios posed a danger, said a representative of the local police union.

This tragic shooting involving the caretaker of a man with autism exposes the need for greater understanding of autism and more training for law enforcement officers across the United States.

 

ASNC trains first responders in North Carolina

In our state, the Autism Society of North Carolina has been educating police officers and other first responders about individuals with autism since 2004. Our Autism Resource Specialists participate in Crisis Intervention Team (CIT) training with law enforcement officers through the Local Management Entities/Managed Care Organizations (LME/MCOs) in each area of the state. This is a week-long training that covers a lot of crisis issues and strategies. Select outside agencies are invited to give one-hour presentations on a few special populations. ASNC Autism Resource Specialists provide the autism session every time one of our LME/MCOs provides the CIT training. All of the Autism Resource Specialists are also parents of children with autism, so they bring their personal experiences to these presentations. For some, that may include past interactions with police to share and discuss.

In addition to CIT trainings, ASNC is training law enforcement, emergency personnel, and other first responders through local governments and individual law enforcement agencies. In the past five years, ASNC has provided 61 trainings of 1,423 law enforcement officers and first responders; 614 of those were trained in the last year alone. These officers then took that information back to their units or served as the go-to people for future calls involving individuals with autism.

If you are a parent who wants to work with ASNC to schedule trainings for first responders in your area, please contact your local Autism Resource Specialist for assistance. Often ASNC Chapters also assist in planning and sponsoring the trainings.

 

ASNC advocates for training

In 2005, advocacy by the Autism Society of North Carolina and other agencies spurred the North Carolina legislature to pass a law requiring autism training to be part of Basic Law Enforcement Training (BLET) for all new recruits across the state. ASNC and Judge Kimberly Taylor, a former ASNC Board member, led the advocacy after the tragic death of a young adult with autism while in the custody of officers in Statesville. If you are the caregiver for an individual with autism and you contact the police because of a crisis, you can request that an officer being sent has been through the BLET after 2005 or the CIT Training.  Recognizing the importance of training first responders, the NC General Assembly and the Office of the Governor have supported efforts by the Autism Society of North Carolina to produce and distribute training videos as well as conduct in person training across the state. ASNC continues to advocate for funding to ensure that officers and other emergency personal get access not just to basic information about autism, but also to in-person interactive training with our expert staff.

 

ASNC provides safety information

The Safe in the Community section of our website, at http://bit.ly/ASNCSafetyKit, includes many resources that can help families with wandering and other safety concerns.

  • Tips sheet on wandering prevention
  • Printable “personal information record” for you to fill out and share with first responders about your loved one with autism, before a crisis occurs
  • ID card you can print or order
  • “Person with Autism” decals you can order for your home or vehicle
  • Social narratives to teach individuals how to be safe
  • Links to other resources and products such as ID labels

Our Autism Resource Specialists also offer a workshop titled “Staying Two Steps Ahead: Safety Considerations for Caregivers,” which covers how autism can affect safety, how to be proactive, and safety-related resources. It will be presented in webinar form online on Sept. 19. Find the schedule for all of our workshops at http://bit.ly/ASNCWorkshopCalendar.

 

The Autism Society of North Carolina strives to create a community of understanding and acceptance of individuals with autism. We can work together to keep our loved ones safe. If we can help you in any way, please contact us at 919-743-0204 or info@autismsociety-nc.org, or find an Autism Resource Specialist near you: http://bit.ly/AutismResourceSpecialists.

 

Focus on Successful Transitions at ASNC Conference

DSC_0473

The Autism Society of North Carolina held its annual conference March 11-12 in Charlotte. We will be sharing information from conference presentations in upcoming blog posts.

Dr. Laura Klinger, Executive Director of the UNC TEACCH Autism Program in Chapel Hill, opened the second day of ASNC’s 2016 conference with a presentation titled “Autism Grown Up: Supporting Positive Adult Outcomes.”

One of TEACCH’s goals is to learn more about adults with autism, Dr. Klinger said. The changing prevalence of Autism Spectrum Disorder means a wave of adults is coming, and very little research has focused on adults and what services they need. TEACCH, as a part of the University of North Carolina, a research institution, aims to create new services and research the effectiveness of those.

With that goal, TEACCH has been conducting a study of adults with autism who were served as children by TEACCH from 1969 to 2000. The study includes surveys of the adults themselves as well as their caregivers. It aimed to discover what factors predict adult employment and examine the relationship between employment and adult quality of life.

The survey results of the adults with autism have not yet been analyzed, but Dr. Klinger was able to share the results of the caregivers. The survey included questions on the individuals’ living situations, education levels, amount of assistance with daily self-care, employment, and services received.

From those results, three main conclusions were clear, Dr. Klinger said:

  1. Conversation ability does not predict whether individuals can maintain a job. It does predict whether they ever have a job. What predicts very strongly whether you can maintain a job is daily living skills. Can the individual perform the following self-care tasks: grooming, cleaning, laundry, cooking, etc.
  2. Employment improves quality of life. Individuals who are employed are more satisfied with life, have a better sense of belonging, feel more empowered, have more contact with friends, and have less anxiety and depression.
  3. Significant supports for daily living skills and employment skills are needed for many adults with autism.

So how can we prepare individuals with autism for adult employment, which will bring so many benefits? The keys are to start early, teach daily living skills, and provide autism-specific supports in organization, emotion regulation, and social skills.

TEACCH programs

Dr. Klinger shared details of two programs that TEACCH offers for teenagers with autism to help prepare them for transitions to employment or post-secondary education: Project SEARCH and TEACCH School Transition to Employment Program (T-STEP).

Individuals who need more intensive support enroll in Project SEARCH during their last year of secondary school. The class includes internships at host employers and the support of a full-time teacher as well as a job coach.

T-STEP is aimed at high-school students who are enrolled in regular education classes, with a borderline to average IQ. The program includes a minimum once-a-week internship, skill-practice opportunities, and group sessions for one semester. T-STEP begins with self-assessments, so the individuals’ responses about their goals and challenges determine what they will work on.

Prepare Your Child

Dr. Klinger shared areas that TEACCH focuses on with individuals with autism in transition, some of which families may be able to work on at home.

Organized daily living skills: Students with ASD should learn to do the following activities independently:

  • Use a cell phone, make calls, retrieve messages, erase old messages
  • Use a planner/calendar system
  • Use an alarm clock
  • Use a washing machine and dryer, including coin-operated
  • Take medicine and monitor need for refills
  • How to clean in an orderly, systematic way, such as from left to right. Many first jobs involve cleaning.
  • Ask your child what he or she wants to learn. Then determine what skills are needed to get there? Plan it out in steps.

Self-awareness and self-monitoring: Students have a lot of experience with people telling them what they do well and what they need to work on, so teens with autism may struggle to initiate, inhibit, control, and generalize behaviors. They must learn to perform tasks without reminders.

  • Use a daily planner. The individual should choose what type will work best and learn to put activities on, create a task list, follow the list, and check off items.

Social skills/advocacy: For employment readiness, individuals must learn social skills are not just about friendship. Individuals with autism may think, “Why bother?”

  • Ask how the individual wants others to perceive him or her.
  • Discuss with them why they should bother. They may think that they don’t care whether people say hello and goodbye, so others should not either. Explain that people who have better social skills go further in employment.
  • Teach them social pleasantries: greetings, compliments, please, and thank you.
  • Sometimes you might have to tell teens to just fake it. “I know you don’t want to do it, but you want this job.”

Emotion regulation: It is important that individuals learn coping skills to keep from being overwhelmed and feeling in control.

  • Have them choose a coping skill that works for them: Go to a quiet area, take a walk, listen to music, practice deep breathing, tensing/releasing exercise, think or read about or see pics of things I like, practice slow stretching, say positive things, write in a journal, count to 50
  • Practice the skills at times when they are not stressed.
  • When they were kids, they could get up and leave some situations. That is not always appropriate as adults, so they need in-the-moment ones, and some that can be a daily practice to relieve stress.

 

If you would like to learn more about preparing your teenager for a transition to adulthood, see ASNC’s website. We also offer workshops called “Journey to Adulthood” and “Preparing for College Starts at Home”; find our Schedule of Workshops here.

Guidance on Medicaid and EPSDT regarding Autism Treatment

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

What is EPSDT?

It stands for Early and Periodic Screening, Diagnostic and Treatment (EPSDT). EPSDT is a child health program in Medicaid to help the physical, developmental and mental health needs of children under the age of 21. The idea is to find and treat illnesses and developmental conditions early, so that children have the best chance in adulthood. Children who are on Medicaid are automatically qualified for EPSDT services; they and their families do not need to sign up for a separate program.

What is covered?

EPSDT covers screening and diagnostic tests for various illness or conditions, as well as medically necessary treatment. This can include:

  • Preventive screening
  • Comprehensive diagnostic evaluations
  • Behavioral assessment and the development of a treatment plan
  • Delivery of research-based intensive behavioral health treatment(s)*[RBI-BHT]

*There are many research-based treatments for autism. They may include interventions such as ABA (applied behavioral analysis), TEACCH (structured teaching), pivotal response training, “Floortime,” and other interventions that prevent or minimize the adverse effects of Autism Spectrum Disorder (ASD) and promote functioning of the person with ASD.

The Centers for Medicare & Medicaid Services (CMS), the federal agency that oversees state Medicaid programs, now requires states to cover behavioral services for autism for children under 21, as well as other autism interventions. North Carolina is just starting to implement access to EPSDT for autism, including evidence-based intensive behavioral treatments.

 

How do families access services for children under the age of 21?

They must be Medicaid-eligible. Families can find out whether they or their child is eligible for Medicaid by applying online and/or through their local Department of Social Services. http://dma.ncdhhs.gov/medicaid/get-started/apply-for-medicaid-or-health-choice

  1. Medicaid is income-dependent; however, some categories of children, such as some of those receiving SSI/SSDI, may be eligible based on their disability and not on the family income.
  2. Children under 21 who are eligible for or receiving an Innovations waiver, a Home & Community-Based Medicaid waiver formerly known as CAP-MRDD or CAP-IDD, or B3 services, are eligible for EPSDT services. Prior approval must be obtained if the cost of services will exceed the Innovations waiver limit.
  3. Children receiving a CAP-C or CAP-DA waiver may get EPSDT services, but cost of care may not exceed the waiver limits.

Official requests for autism behavioral interventions must be made by a clinician (a physician, or licensed clinician such as a psychologist), using the “Non-Covered State Medicaid Plan Services Request Form for Recipients Under 21 years Old.” In this case, “Non-Covered” means that autism interventions are not listed in the NC State Medicaid Plan. EPSDT services, including autism behavioral interventions, are covered by Medicaid, just not listed. Requests should focus on the medical necessity of autism interventions. Requests must explain how the treatment is safe, effective, non-experimental, and medically necessary to correct or ameliorate the condition.

  1. Requests for children under the age of 3 should be made directly to the NC Department of Medical Assistance (DMA) in the NC Department of Health and Human Services. Information about EPSDT for health and treatment providers can be located at https://www2.ncdhhs.gov/dma/epsdt/. DMA can be reached by phone at 919-855-4000.
  2. Requests for children ages 3 to 21 should be made to the local LME/MCO. You can find information about contacting your Local Management Entity Managed Care Organization at http://www.ncdhhs.gov/providers/lme-mco-directory.Provider and clinician requests for autism services under EPSDT will likely be processed by the LME/MCO’s Utilization Management (UM) Department. Each LME/MCO might have a different process. Please contact the LME/MCO where the recipient resides for information about processing EPSDT Non-Covered Services requests. Typically, they have information on their websites linking to the forms and process. If you have a Care Coordinator, the Care Coordinator should guide the recipient through the process.

Families may contact the LME/MCO directly to ask for EPSDT services through the LME/MCO’s Access line. Locate the LME/MCO region and contact info here: http://www.ncdhhs.gov/providers/lme-mco-directory

  1. While a clinician must make the official EPSDT request for Medicaid Non-Covered Services (see above), families can call the LME/MCO access line to ask for services for autism under EPSDT for their child who is Medicaid-eligible. LME/MCOs should provide information about how to access EPSDT services, including such things as finding a clinician to do an assessment and to request services, finding a provider of autism behavioral care, and help in understanding their benefits under EPSDT.
  2. Families calling the LME/MCO access line should say, “I want treatment for my son/daughter who has autism. My child is on Medicaid and they should be eligible for EPSDT services.”
  3. LME/MCOs should help people calling to locate a RBI-BHT or a provider of other EPSDT services. There may be limited numbers of providers in a given area. If you/the family do not already have a provider identified, you/the family may want to try contacting your local Autism Society of North Carolina Autism Resource Specialist for information about resources. Click here or call 800-442-2762 to locate a local ARS. Your potential provider may be able to help you in accessing services with the LME/MCO; please consider contacting the provider first if you have trouble accessing services on your own.
  4. If the LME/MCO access staff say that you are not able to get EPSDT services or that they are not aware of EPSDT services, ask to speak with staff who has expertise with intellectual and/or developmental disabilities and/or with autism. Repeat what you are looking for with the IDD specialty staff.
  5. If you are told you cannot get EPSDT services over the phone:
    1. Ask the reason that the child under 21 does not qualify.
    2. Contact one or more of the following:
      The LME/MCO’s Customer Service or Complaints line (ask for their contact information)
      The NC Department of Health and Human Services Customer Service line at 800-662-7030. NC DHHS is responsible for Medicaid services in NC. Tell them that you are having problems accessing EPSDT services for your Medicaid-eligible child with autism.
      Disability Rights North Carolina at 877-235-4210 or 919-856-2195. DRNC is an independent advocacy organization that advocates and provides legal services to protect the rights of children and adults living with disabilities in NC.

 

Medicaid Appeals

If you get an official written denial of EPSDT services, it can be appealed. Follow the process outlined on the denial letter from the LME/MCO. For additional help with an appeal, you can visit the Medicaid website or call 919-865-4260.

If you have problems filing an appeal or are told you cannot file, contact Disability Rights North Carolina at 877-235-4210 or 919-856-2185.

 

Disability Rights North Carolina offers self-advocacy guides on its website, including guides for Medicaid and health care. The guide titled Autism Related Services in North Carolina provides additional legal information about Medicaid EPSDT and autism health-care coverage.

 

ASNC Provides LifeLong Interventions, a research-based intervention for autism treatment. If you are interested in having ASNC provide research-based, intensive, behavioral health treatments, such as LifeLong Interventions or ABA, please click here or contact Crystal King at 919-865-5077 or cking@autismsociety-nc.org or Whitney Luffman at wluffman@autismsociety-nc.org. At this time, ASNC is providing these services in the Charlotte and Triangle areas. We plan to expand to other parts of the state based on need. Please let us know if you are interested in receiving services in another area.

Click here to download or print a PDF of this information.

Moving from Awareness to Acceptance

 

2015.10.22.SandersonPALS 041

This April, for Autism Awareness Month, the Autism Society of North Carolina is focusing on acceptance and inclusion, not just awareness.

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. Children and adults with autism have much to teach us, and they have unique gifts that can make our communities better places to live for all of us.

How can you help share this message and move your communities from awareness to acceptance? Check out these ideas:

  • Use the hashtag #A2AforAutism everywhere: 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 Saturday, April 2, at Camp Royall
  • TshirtWear the #A2AforAutism T-shirt as often as you can wash it. (Don’t have one? Buy one from the ASNC Bookstore)
  • Put an #A2AforAutism magnet on 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.
  • Ask to provide a presentation or display on 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.

We are truly excited about this campaign. Imagine what acceptance could do for our loved ones with autism. We thank you for your efforts throughout April!