Staying 2 Steps Ahead: Safety in the Community and at Home

This week’s Blog post comes from Autism Society of North Carolina Parent Advocate/Trainer Judy Clute.

Parents worry about their children’s health, happiness, and well-being, but parents of children with autism spectrum disorder (ASD) must look at their environment closely and take great care to ensure that their kids are safe both inside and outside the home. Why is safety for the person with ASD different from any other safety measures you would put in place for any child? Here are some things to consider:

• Communication – Whether there is a lack of language or whether language is limited, this is the top reason we need to think ahead for our family members with ASD. Can they communicate to someone if they are lost or hurt? Will they be able to ask for help? Even if they are verbal, will they be able to communicate appropriately and effectively?
• Judgment – Consider that sometimes people with ASD have poor judgment. They may not recognize who is safe to go to for help. Do they know where to seek out help? Do they know who in the community is safe to go to?
• Sensory issues – People with ASD may run toward something of interest (ie: a train, a sign, music, water) or run away from something that is overwhelming (i.e. : music, loud sounds, too much commotion, lights). Needless to say, this can be a safety issue.
• Problem solving skills – Such skills may be impaired by rigid thinking, lack of perspective and/or anxiety. If your child were lost or hurt, would they know what to do next?
• Different learning styles - How can you teach your child about safety issues? Because of poor communication skills, many individuals with autism cannot share information verbally, some use visual cues, some use technology. How can they use these things in case of an emergency?

Children with ASD can be much more impulsive than neurotypical children. They may run away or wander off more than their typically developing peers. This can put them in greater danger of becoming lost, getting hurt, and becoming vulnerable to strangers. So what can we do?

“An ounce of prevention is worth a pound of cure” but for parents of a child with ASD, it may feel more like a pound of prevention is needed. But the saying holds true, it’s better to prevent a problem than trying to fix it afterwards. Here are some tips for caregivers to consider:

1. Do not isolate yourself – Inform you neighbors about your child or family member with ASD. Educating your neighbors about your child and their challenges can help if he/she ever wanders out of your home or yard. Give them your contact information and let them know what your child likes and dislikes.
2. Contact first responders – Go to your local police station, fire station, and EMS. Take a current photo of your child along with a personal information handout (available in the ASNC Safe in the Community Kit). Include as much detail as possible about your child.
3. Plan and rehearse – Does your loved one with ASD know what to do in case of a home fire? Are you prepared? The National Fire Protection Association has a great website that can help you and your family member with ASD be prepared. Their website has activities for children and a social story that can be individualized for your child. Another important skill to know involves teaching your child when and how to call 911.
4. Securing your home – Consider putting safety items in place such as a home security alarm system, window locks and/or alarms on windows and doors to alert you if someone is trying to open them. Sometimes putting a “stop” sign on doors and windows can prevent a person with ASD from going any farther. If your child runs or wanders, consider putting a fence around your home with locked gates. If you have a pool, make sure the pool is not accessible without supervision. Teaching you’re child to swim is important, but it isn’t a guarantee that it will save someone from drowning.
5. Communicate with your school – Discuss with your child’s teacher your concerns about your child’s safety. You may want to suggest that they offer a “Safety in the Community” workshop or other such training. Make safety part of his or her IEP goals. Work on how to safely cross the street, learn to recognize street signs (like “STOP”), and discuss who is a safe person and who is a stranger.

The Autism Society of North Carolina’s “Safe in the Community Kit”

The Autism Society of North Carolina can provide you (free of charge) “Safe in the Community” kits that contain some simple stickers to put in your windows to let first responders know if there is someone in the home with ASD. This simple sticker can make a huge difference in case of emergency. The kits include personal information sheets that can be shared with caregivers, first responder agencies, and others as well as ID cards that you can teach your child to carry with him or her at all times.

Kit Contents

Here are some great websites for resources to help you keep your ASD family members safe.

• www.AutismSociety-NC.org — We can help with education, resources and provide “Safety in the Community” kits
• www.mypreciouskid.com – has safety items for home and community (i.e. Signs, ID bracelets, home safety items)
• www.AWAARE.org – has several caregiver resources and tips

Adult Issues
What about adults with ASD or those with High Functioning Autism or Aspergers? These people may have wonderful spoken language but may not respond appropriately to a first responder or neighbors. They may be anxious or afraid. It is important to teach these individuals what to say in the event they are lost or hurt. They should be taught who they can trust – like a police officer, a fireman, a teacher. Introduce them to neighbors and family members that you trust. Help these individuals learn to self-advocate.

Another thing to consider is bathroom etiquette. You may wonder what this has to do with safety? Well, does your child go to the bathroom in restaurants or public parks by themselves? Most women do not realize that there is different bathroom etiquette for men than for women. Women frequently make conversation with others they may not know in a public restroom. This is not true for men. Children, especially boys, need to know not to talk to strangers in public restrooms and what to do if a stranger approaches them. Again, do they know who a stranger is? If not, teach them. They need to know how to address or respond to a policeman? They may be in a situation where it would be important to disclose that they have autism and need help. Teaching self-advocacy skills is extremely important.

Another consideration is internet safety. Many individuals have poor social skills and social judgment. For these individuals safety measures should be put in place to manage internet access – whether at home, school, or in the work place. If you have a child/young adult who is visual, place instructional picture cards directly on the computer. If they can read and understand written language, keep those rules right next to the computer and negotiate an internet use contract. Check with your ISP on safeguards. The NC Department of Justice has a website that contains several safe guards for internet safety: http://www.ncdoj.gov

Be proactive! Contact the Autism Society of North Carolina and let’s work together to keep our children and loved ones with ASD safe and sound.

Judy Clute is a Parent Advocate/Trainer in the ASNC Raleigh office. If you have any questions or concerns, please do not hesitate to contact her by email at jclute@autismsociety-nc.org or call 919-865-5091.

A Parent’s Perspective – By Kathleen Dolbee

Editor’s Note – This article is from Kathleen Dolbee, a parent, educator, and ASNC Parent Advocate/Trainer. Kathleen can be reached by email at kdolbee@autismsociety-nc.org.

Last year I attended a conference at Western Carolina University, a small conference, more like a class. At the request of the professors presenting, before beginning we took turns introducing ourselves and explaining briefly why we were there. Most of those attending were professionals, but a handful of parents attended also. As often happens, I fit into both categories. But right from the start the difference between those two perspectives was apparent, at least to me, and it reinforced in my mind the fact that I am and always will be, first and foremost, a parent. Let me explain.

Because professionals endeavor to be objective and are required to protect the confidentiality of their “client” or “consumer”, specific names are never mentioned. Not so with parents! Our children were the reason we were there in the first place and they had names, names we mentioned when introducing ourselves, names we gave them the day they were born. No claim or pretense of objectivity with parents, everything is personal.

The instructors were excellent, and there was no doubt that they were experts in their field. However, more than once it seemed clear to me that they did not “get it,” but in fairness, how could they? When one parent expressed concern about a safety issue, one instructor commented in an off-handed manner that all of us engaged in behavior that was somewhat risky when we were young and doing so is a normal part of life. I wanted to raise my hand and ask him to define “normal”, but I didn’t. Clearly, he viewed the parent as overprotective. He explained that growing up is dangerous for all kids; “Get over it”, he said. I wanted to scream, “You have no idea what I have already had to get over!” but I didn’t. Over the years I have learned that it is better to keep my mouth shut when my heart, rather than my brain, is doing the talking. Please understand, I am not disagreeing with the expert, only wishing he had better empathy skills, wishing he could understand the viewpoint of a parent whose child struggles with challenges day in and day out and does not need to learn any more lessons the hard way.

During the lunch break, I enjoyed listening as mothers exchanged funny stories that only another parent would laugh at. It is a different kind of sorority, I think, sisters because we met while traveling the same road. There is no need for a secret handshake or a membership card. We know who we are. We recognize each other by the expressions on our faces, like looking in a mirror.

So here’s to us! Whether you are still reeling from the blow of a new diagnosis and you are wondering if you will ever laugh again, we’ve been there. If you are fighting the fatigue felt by parents trying to supervise an impulsive child who never sleeps, we understand. If you’re trying to be strong, patient and logical, but your nerves are stretched to the limit, or your back to school optimism is being quickly replaced by panic, join the crowd. If you need to share your concerns, not because you expect quick answers, but because you need someone to validate your struggle and praise your efforts, give me a call.

For a complete list of Autism Society of North Carolina Parent Advocate/Trainers please click here.

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.