How You Can Help

Editor’s Note – The following article is written by Kristy White, Director of Development, and describes a variety of ways people and corporations are helping to make a difference.

Anyone can join the Autism Society of North Carolina’s team and make a difference in the lives of individuals with autism and their families. Whether through creating your own run/walk team, planning a local fundraiser, participating in planned giving, or volunteering, there is a place for everyone looking to improve the lives of individuals with autism, support families affected by autism, and educate our communities. Here are a few examples of individuals and corporations who are making a difference today:

• The Independent Insurance Agents of North CarolinaYoung Agent Committee has partnered with ASNC for their annual project. Agents have participated in the Camp Royall Golf Classic, volunteered at camp, and are the leading fundraisers for the Triangle Run/Walk for Autism. We are also thankful to the corporate support received from Premier Communications, Panduit, and Senn Dunn Insurance.
• Taco Mac, recently opened three stores in the Charlotte area of North Carolina and is proudly partnering with the ASNC to provide financial support to Camp Royall. Taco Mac is committed to making an impact in the community in which it operates. Stop by one of their family friendly locations and enjoy “Camp Corn”, a percentage of the proceeds from each order of “Camp Corn” will be donated to Camp Royall.
• Jeff and Sheena Greiner, owners of Asheville Zipline Canopy Adventures hosted Zipping for Autism and raised $31,000 to support ASNC services in western North Carolina in the inaugural Wells Fargo Zipping for Autism. Mark your calendars for June 2, 2013 to participate next year.
• Company employees are helping us make corporate connections. ASNC regularly applies for corporate grants as part of our overall fundraising efforts. The majority of companies require an employee connection with a non-profit organization before you are eligible to apply for the donation. Share where you work with us today and help ASNC receive support from your place of employment.
• Twenty one BB&T employees volunteered eighty eight hours for the Lighthouse Project and provided $3,890 to Creative Living in Raleigh. Their work enhanced the facility tremendously. Contact us to find out where you can volunteer and make a difference in your community.
• Chris Mentas of Custom Home Improvement in Charlotte, NC donated $2,500, a percentage of his profits during April Awareness month, to Camp Royall. See a picture below of Chris visiting Camp to learn more about the impact of his donation.
• Bailey’s Fine Jewelry in Cameron Village in Raleigh recently gave ASNC a check for $1,566. They offer watch battery replacement for free and offer their customers the opportunity to donate to a non-profit each month. Do you have a creative idea to get involved?

To get involved and change lives, contact Kristy White at kwhite@autismsociety-nc.org or 919-865-5086.

Chris Mentas (r) with Tracey Sheriff, ASNC CEO (l) and Tara Regan (c).

Avoiding Power Struggles

Editor’s Note – This week’s article is provided by Amy Hobbs, Training Coordinator, for the Autism Society of North Carolina. Amy works out of the ASNC Asheville office and can be reached via email at ahobbs@autismsociety-nc.org or via phone at 828-236-1547.

Despite the welcomed summer break, after a few weeks without the structure of school many children with autism spectrum disorder (ASD) begin to get restless. Too much unstructured time can result in kids spending endless hours on the internet, watching movies, playing video games, or engaging in other favorite activities. This in turn can cause them to have a more difficult time and sometimes a struggle leaving or ending those activities to do other necessary things like chores, exercise, hygiene, outings, etc. Creating consistent routines, making plans, giving choices, using visuals and maintaining a positive attitude with individuals with (ASD) are important strategies that help avoid these types of power struggles.

Developing consistent summer routines can help individuals with autism complete daily chores as well as understand and accept new activities and demands. Start by creating a daily routine that stays the same as much as possible Monday through Friday. Keep roughly the same schedule on Saturdays and Sundays as during the school year. Within the M-F routine, establish set times for chores, hygiene, meals, exercise, work, skill maintenance, social opportunities and preferred activities. Whenever possible, include the individual with ASD in making choices within the schedule and be sure there is consistency with the times and activities that are planned. To incorporate new or different things there can be a time each day for “something new”. The individual can choose whether to try a new game, outing, food, exercise, park, etc. The favorite activities can certainly be a part of the day too. By scheduling them after other mandatory chores have been completed and for specific amounts of time with a clear ending time (like 4:00 or when the bell rings for example) will help with the transition away from the activity.

Remember that “seeing is believing” and making it visual helps the individual with ASD better understand and accept the expectations. Creating a chore chart is one way to give a visual representation and structure to completing chores. The chart could have 4 or so chores that need to be completed every day, 4 or so that need to be completed twice a week, and some on Saturday. The individual can choose the order in which they do specific chores for each day, the times that they do them, what days they do them, etc. Giving choices increases the individual’s sense of autonomy and control as well as their motivation for completion or follow through.

Having a “break time or nap time” after lunch can provide an individual with autism a much-needed respite in his/her room or another calm area of the house with low stimulation. Particularly with the heat that we are experiencing this summer, remember to encourage individuals to drink lots of water and plan activities that help them stay cool. Some ideas to consider are a community pool, a backyard pool or sprinkler, a mountain stream, air-conditioned library or book stores and walking at the mall. Another idea is to take a cool leisure bath during the day for an individual who likes water. You might add some bubble bath, low lighting or soft music depending on the person’s preferences.

The more thought out the plan, the better when it comes to avoiding power struggles. First, it’s important to make sure that the individual with autism understands the plan. Typically, using visual supports (whether written, pictures, or objects) can help ensure that the expectations are clear. Next consider how much of a notice the individual needs before introducing a new activity, vacation, trip, change in schedule, etc. The amount of time needed for processing a change or new plan varies a lot between individuals. Some do better if they know pretty far in advance so they have time to adjust to the idea whereas others will only become anxious and obsessive if given too much of a heads up.

Anticipate what may be hard about this new activity and think of what you can do to make it easier. For example, keep some favorite items like stress balls, dinosaurs, cars, music box, slinky, bubbles, and other soothing items close at hand in your back pack and bring them out when needed to help distract, redirect or calm.

If you are experiencing a recurring power struggle and you respond in the same manner each time, it is most likely time to change your response to the behavior. The power struggle has become a routine and it will be up to you to change it. Keep in mind that if the function of the behavior is to gain attention, it might be that even negative attention such as arguing may be rewarding. Think of an alternative response that will redirect the individual to another topic or another activity. If there are certain topics or situations that bring on power struggles, try to steer away from them.

Remember that the challenging behavior is most likely a result of the individual’s autism and it’s important to maintain a calm and clear response. People with ASD have difficulty communicating and understanding social interactions. They also have difficulties with self-regulation and can become overstimulated easily by factors in the environment that we may not even be aware of. Our job as parents, professionals or friends is to support them by keeping a positive attitude.

By thinking ahead and making a structured plan for the upcoming days left in the summer, you can prevent many challenging behaviors from occurring.

Tips for Parents Transitioning to the Innovations Waiver

Editor’s Note – The following article was written by Jean Alvarez, Parent Advocate/Trainer for the Autism Society of North Carolina and parent of a young man on the autism spectrum. Jean lives in western NC.

As Local Management Entities (LMEs) move from the old system of service delivery to a network of MCOs and a new waiver – called Innovations, the changes will inevitably cause uncertainty and concern among parents whose children need these services. The Western Highlands Network (including 8 counties in the Asheville area) made the transition in January and the dust has not settled yet. I live and work in the Western Highlands catchment area and based on what I have heard from families and professionals, Innovations is a different playing field and the principal players don’t have all the answers.

My son Jaime has services through the Smoky Mountain LME, soon to be Smoky Mountain Managed Care Organization (MCO) as of July 1. Jaime has a very savvy case manager who walked Jaime’s team through what he called a mock Individual Supports Plan (ISP) meeting on June 12 in preparation for Jaime’s transition to Innovations. Jaime has an August birthday which means his annual plan falls due in the middle of the transition, something which heightened my anxiety. I had been dreading these monumental changes for months and found it very helpful to go through a practice session prior to the transition. The following information is based on what I learned at this meeting and it is intended to help parents be proactive in preventing their child’s needs from becoming someone else’s dropped ball.

Changes in terms:

• Local Management Entity (LME) is now Managed Care Organization (MCO)
• PCP (person centered plan) changes to ISP (Individual Support Plan)
• Person Centered Meeting is now ISP meeting

Other changes:

• Case managers change as well: Under Innovations Care Coordinators work for the MCOs. – Care Coordinators will NOT be the same as case managers and families have to understand this. Care Coordinators are responsible for the plans and meetings. If your child lives outside of the home (Group Home, AFL) or if a person’s parent provides services they need to be seen monthly.
• Coordinators (Qs) with the Providers, such as ASNC, will basically stay the same but will have additional responsibilities
• Community Guide – a new service that can help families navigate the changes as well as help with other areas of need.
• People receiving state funded services may/may not have a Care Coordinator. In some MCOs responsibilities for state funded services have been passed on to the provider coordinators (Qs).

Suggestions for Parents

Case Management is gone now and depending on the MCO, parents may have to advocate for Community Guide service for help navigating the new array of supports. One way to advocate for Community Guide is to emphasize that if any of your child’s services are lost in this process it threatens his/her health and safety. Here is an example:

If an adult was successfully living and working in their community with necessary supports and the new ISP included a reduction in services, this is how it could impact their health and safety. If they only received 3 days per week of supported employment instead of five and did not have a trained job coach with them, what would happen if they became overwhelmed and bolted from the job site? This person would be alone in a city without the judgment and skills to keep themselves safe. In addition to being at risk for exploitation she/he would lose their job. Without a consistent schedule outside of their group home five days a week he/she would also lose their residential placement which would put them at risk for institutionalization.

I realize that this example is only relevant to parents of adults and there are many parents with younger children transitioning to the waiver. Keep in mind that Community Guide is a service to help them navigate all these changes and could help them learn how to insure that their child’s needs are still met by Innovations.

The Care Coordinators are brand new people who have huge case loads. It is very likely that they will not have time to read the background information and will not know your child. Parents will have to plan to educate this person on their child and the need for the services they are asking for.

In some cases Care Coordinators have been telling parents what services they can have. Parents have to be sure to ask for the services their child NEEDS. This is not the Care Coordinator’s call, they submit the plan for approval or denial but the team determines what needs to be in the plan.

If a plan is denied there is an appeal process.

Some elements of the plan have stayed the same and some have changed so don’t panic if it looks different. However, the plan should still describe your child’s needs and why the support is necessary.

Don’t sign the signature page until you have read the finalized plan. Care coordinators should not ask parents to sign the signature page before the parent has the opportunity to read through the final plan. There have been cases where the final plan was different from what was discussed and agreed upon by the team. The care coordinator had the signature page signed and did not submit the plan that the team agreed on.

There may be differences from MCO to MCO. Stay informed, ask questions, and advocate for your child.

The Summer Spectrum (arriving in mailboxes and online in early August) will also include information about the transition to Managed Care and Medicaid Services. Meanwhile if you have questions or concerns, visit the ASNC Calendar of Events to see if there is a workshop on this topic near you or contact your ASNC regional Parent Advocate/Trainer.

What’s in health reform (Affordable Care Act) for people on the autism spectrum?

Editor’s Note – Thanks to Jennifer Mahan, Autism Society of North Carolina Director of Government Relations for the following analysis of last week’s Supreme Court ruling on the Affordable Care Act.

The Supreme Court of the United States recently upheld the Affordable Care Act (ACA) which would expand health care coverage for many people in the United States. It’s a large and complicated law (click here for the Health Care Law website where you can read the complete text of ACA), and the regulations have yet to be written, but it contains a number of items that are of great benefit to people on the autism spectrum including:

• Insurers must cover people regardless of pre-existing conditions, cannot put in place excessive waiting periods for coverage, and cannot selectively refuse to renew coverage.
• Insurers cannot charge different premiums based on health status, gender or occupation.
• Insurance companies have stricter limits on the use of lifetime or annual limits for covering certain health conditions.
• Expands coverage for “behavioral health treatments” and habilitative services, which we believe will include autism therapies like applied behavioral analysis (ABA) and services that help improve and maintain social skills, communication skills, and reduce behavioral problems.
• Allows parents to keep children on their health plans up to age 26.
• Allows states the option to expand coverage of Medicaid to individuals with developmental disabilities (through a variety of home can community based options and flexible coverage options) as well as low-income people, including childless adults, who did not previously qualify for this coverage.
• People who previously could not afford insurance qualify for subsidies to make health care insurance more affordable.
• Small businesses get additional tax credits to offer health care coverage to employees.

For people who have co-existing mental health disorders:

• Requires plans offered through state health exchanges and in the small group market to follow the mental health parity act of 2008, ensuring coverage of mental illnesses and emotional or behavioral disorders.
• Encourages the use of medical homes and improves coordination of primary health care with other behavioral and mental health services.

While the ACA does not cover every person without health care and  does not apply to every kind of insurance, we believe there are many benefits to the law. Some provisions of the law have already gone into effect, and many more will go into effect in January of 2014.

The Autism Society of North Carolina will continue to provide updates about the ACA through this Blog, our monthly email newsletter and on our website.