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.

 

 

 

TIPS Serves Adults with Autism

tips-167Serving others is obviously important to members of the Triangle Indian-American Physicians Society (TIPS); they are, after all, in health care. But serving outside of their chosen careers is also important to them. For years, members have volunteered their efforts and expertise at free clinics all around the Triangle and at a yearly free screening.

 

Three years ago, TIPS wanted to give back to the local community in a different way. They worked with friends and local business leaders to research charities and decided the Autism Society of North Carolina had the kind of impact they were seeking.

 

“ASNC has been the leader in helping not only families but adults with autism. Some of the success stories of adults being able to be a functioning part of our society really hits close to home,” a TIPS board statement said. “We as health-care providers are always trying to make a positive impact on patients, and we feel ASNC also is doing the same for people living with autism in our state.”

 

Several TIPS members have loved ones with autism and others frequently work closely with patients with autism as in their health-care practices. In addition, ASNC has supported multiple adults with autism who have gained meaningful employment at one member’s local Raleigh pharmacy.

 

TIPS has held three events to benefit ASNC: two golf tournaments and a gala with live and silent auctions. These events raised close to $100,000 to benefit ASNC’s Employment Supports department, which enables adults with autism to become contributing members of society and feel a part of the communities in which they live.

 

The events also brought in hundreds of attendees, raising awareness of autism in the community, a success that the TIPS board notes is immeasurable.

 

tips-133Kristy White, Chief Development Officer, praised the dedication and time that the members of TIPS put into their events to give adults with autism full and meaningful lives. “I think it is so remarkable what they give on a daily basis through their work, and then to do this for us in their spare time. They spend every moment making a difference in each and every life.”

 

We are grateful for the partnership of TIPS and excited to see its future!

 

The TIPS board stated, “We hope to continue to raise awareness about autism professionally as well as socially in the surrounding communities, and hope to keep hosting these great events to raise the much-needed funds to keep this program running and helping empower adults with autism.”

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