Household Chores Teach Independent-Living Skills

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This article was contributed by Kathy Dolbee, Autism Resource Specialist for the Autism Society of North Carolina and autism mom.

“Can my child do household chores?”

The simple answer is, “Yes.” Teaching your child to do household chores is an important part of teaching him independent living skills. However, there are a few important things to keep in mind. Be careful not to presume that your child knows how to do the task just because he or she has seen it done by others.

Remember, kids with Autism Spectrum Disorder (ASD) are visual learners, and sometimes they have difficulty remembering all the steps of a particular job and sequencing those steps in the right order for the desired outcome.

Patiently teach your child, step by step, using visual supports. However, “thinking visual” doesn’t always mean using a checklist or schedule. For instance, if the floor of your child’s room is cluttered with toys – I am imagining a mixed mess of Legos, hot wheels, and plastic dinosaurs (are you picturing this?) – simply telling your child to clean up the room might not be the best way to get the job done. “Clean up your room” is a vague verbal instruction. Instead, consider providing three bins and turning it into a sorting task. If the task is too big, break it down into smaller, more do-able tasks in a clear and concrete way by using a hula hoop or even a broomstick to segment the job into smaller doses. Remember, kids with autism are often easily overwhelmed. They may crave structure, but they have difficulty creating it.

If the task still seems overwhelming to your child, use it as an opportunity to teach turn-taking. Sitting on the floor with your child, taking turns tossing toys into the appropriate bin is time well-spent, and a memory you will treasure. Some kids have fine motor issues that might make this task a special challenge. You can add to the fun by introducing a dust pan and teaching your child to scoop and dump into a bucket, “just like a construction machine”, even adding sound effects if that helps get the job done. Once the job is complete, consider taking a photograph as a future reference for what a “clean room” actually looks like.

Vacuuming becomes easier when you sprinkle the carpet with something to help your child see where to vacuum and to know when he or she is finished. My favorite is to use the round circles left by a hole punch.

Start off with simple tasks such as watering plants, putting books or videos on a shelf, or wiping the table. If you have several children, you can include them all in a game that was always popular in my classroom: “Dirtiest Wet Wipe Wins!” Simply pass out the wet wipes and the fun begins. It is usually not hard to determine which wet wipe is the dirtiest. The “prize” can be something as simple as getting to use the computer first, with second and third following. The game rewards the most diligent cleaner and at the same time teaches everyone to wait their turn, a vital social skill.

I guess the most important thing to remember is that our kids can and should participate in the normal, daily activities that make up real life. Doing so increases their sense of belonging, self-esteem, and confidence. It is also a vital first step toward independence.

If you are interested in learning more about creating a structured environment at home, please contact me and I’ll be glad to help.

Kathy Dolbee can be reached at kdolbee@autismsociety-nc.org.

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Our Future, Together

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This article was contributed by Kristy White, the Chief Development Officer for the Autism Society of North Carolina (ASNC). Kristy has been a leader in the field of inclusion, launching cutting-edge inclusion models and raising millions for inclusive programming across the country. She joined ASNC in March 2012 because of her passion for improving the lives of individuals with autism and their families.

The Autism Society of North Carolina is celebrating 45 years of improving lives this month! This is certainly something to be proud of, and it is something we all did together. Each and every one of you is an important part of our autism community and family.

Whether we are celebrating new words learned, supporting one another through a difficult school year, or just lending an understanding ear, we pull together to support one another. I think we can all agree that through the hard times and the happy times, the one thing that remains constant is that we are stronger together.

ASNC’s family – made up of the people we serve, our supporters, and our staff across the state – is strong because we have such an incredible love for those in our lives with autism. We know that each and every one of us makes a difference in the life of another.

Personally, I have the life I have today because of a little girl with autism. When I was a young camp counselor, she taught me to see everyone for their abilities. She taught me that we are all better when everyone is included. Because of her, I have had the opportunity to work in our community helping others for almost two decades, made some of the very best friends, and am a better mother. I am so grateful to her for making me the person I am today.

Our loved ones with autism are teaching the world, one person at a time, to embrace each other for our differences. They are teaching the world what any of us is capable of, when given the right support.

As the Autism Society of North Carolina looks to the future, we are committed to working alongside our families throughout their lifetimes to help our loved ones with autism have their best life. To that end:

  • We’ve launched LifeLong Interventions. Think early intervention, but for all ages, because we recognize that people with autism are lifelong learners. So we plan to offer direct training to individuals of all ages, using the same or similar evidence-based practices that have been demonstrated to be so effective with children on the spectrum.
  • Dr. Aleck Myers, our Clinical Director, is leading the expansion of our licensed staff and BCBAs, positioning ASNC as a clinical leader in the field. We continue to be the best provider of services for individuals with autism.
  • We’ve expanded our direct services and increased access to those services throughout the state for more children, adolescents, and adults by recently opening a services office in Mecklenburg County.
  • We are growing our job-training initiatives and created an Employment Supports Department to help more individuals with autism gain meaningful employment.
  • We are advising decision-making entities about how best to work with and prevent crisis for individuals with autism, because crisis response is now recognized as one of the greatest needs for people with autism in North Carolina.
  • We are creating awareness about autism and fundraising for necessary support. We recognize that more is needed than ever before because of the growing number of families affected by autism.

Together, our future is bright! With our support, North Carolinians with autism are teaching people to love, understand, and include people for who they are. I know that is the world we all want to live in.

Kristy White can be reached at kwhite@autismsociety-nc.org.

Dealing with Frigid Weather, Interrupted Routines

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This article was contributed by Leica Anzaldo, Training Manager for the Autism Society of North Carolina.

We have certainly felt the arctic blast this past week, and while it created inconveniences for many of us, for some individuals on the autism spectrum, it wreaked havoc on their lives and those routines on which they are so reliant. Not only has school or work been canceled, but access to the outside limited.

What is at the basis of rigid routines and repetitive behaviors? The answer certainly depends on the individual, but here are some functions you may consider. First, imagine living in a world that is full of inconsistencies, changing rules, and varied expectations. Most of us can adjust to this or have identified our own coping mechanisms that we can access discretely when we need them. Impaired social understanding makes many of these “coping mechanisms” for individuals with autism much more obvious to those around them. I have worked with individuals who work very hard to hold it together all day at school but then must ride a bike up and down the street at least 30 times when they get home to decompress. I have also supported an individual who paces in his backyard so much that there is a deep path in the grass. He uses this routine to escape sensory input and find comfort in a repetitive pattern of behavior that he is in control of. I have also worked with both kids and adults whose only relief from the day’s unknown is to jump while in an outside space. And just this week, I was with a young man who hits golf balls across his yard into a net to calm frustration and prevent aggressive behaviors.

Routines and behaviors can be very important to a person with autism, so attempting to break those routines, change them, or stop behaviors can be very difficult and have negative results. An important strategy is to intervene early. Typically, the longer a person engages in rigid routines and behaviors, the more difficult it will be to change them. Even if your child wants to come home and immediately jump outside on the trampoline for an hour, you can set limits. Use a schedule to show them when they can access the trampoline at different times throughout the day and use a timer to show for how long. This will need to be paired with something reinforcing initially so the person is motivated to engage in this change. For example: “First, Jump for 20 minutes. Then, use iPad for 5 minutes.” This also provides you with a way to expand interests and introduce other activities that may have the same calming effect for the individual.

Prepare for change

If your loved one has a very difficult time with change, such as school being closed, there are things you can do to prepare. Increasing structure can often alleviate anxiety and stress, and even the most verbal individual often can’t rely on verbal feedback alone. Using a visual schedule provides some control of the situation and in turn may reduce anxiety. The schedule itself prepares the individual for the transitions, offers control over the day, provides a predictable and visual representation of what will be happening, and can provide the person with a tool to make choices related to the order of events within their day. Schedules most often do not make the person more rigid, but in fact are a great tool to plug in new activities and transitions that the person might enjoy but wouldn’t have tried if they hadn’t already bought into using a schedule.

A change card is another powerful tool that can be used to prepare the individual for something out of the ordinary. The change card is plugged into the schedule, letting the person know that what usually happens at this time each day is not happening and will be replaced by an alternate activity. For example, if you usually go to the YMCA every day in the afternoon but the roads are impassable due to ice, you can plug in a change card indicating that instead, you will be doing an alternate activity that the person prefers. Or simply add the card or word in that represents the new activity.

An additional important strategy is to practice alternate activities routinely. If your child rides a bike to support self-regulation, what other activities can be done indoors to serve the same purpose? Try these:

  • bouncing on a therapy ball while sitting in front of a fan
  • walking up and down the steps multiple times while listening to calming music
  • pushing something heavy with their legs such as leg pressing another person or doing squats
  • using a Wii or other interactive games that involve movement

An important reminder is that you should practice all of these strategies regularly rather than attempting to implement them when the person is already stressed or anxious. Begin using a schedule on a regular basis, starting with just a few activities, and then systematically expanding. For new activities, treat the activity as a new skill to teach. Consider what the environmental stimulus will be that cues the person to access the strategy or understand the expectation and how the behavior will be reinforced. Instruction itself will depend on the skills of your loved one and his or her motivation. Perhaps you begin with a step within the skill that the person can already do, then teach each additional step using a prompt (model, gesture, physical prompt, etc.) that is most effective for the person and reinforce success. Be aware of the person and their stress level throughout; if a skill is too difficult, it is not a good replacement activity.

For now, let’s all hope that the weather turns warmer – and drier – next week!

Leica Anzaldo can be contacted at 704-894-9678, ext. 1603, or lanzaldo@autismsociety-nc.org. ASNC’s Clinical and Training Department staff is composed of PhD and master’s-level licensed psychologists, Board Certified Behavior Analysts, and former special education teachers. We provide individualized intensive consultation using evidence-based practices to support children and adults across the spectrum in home, school, employment, residential and other community-based contexts. We also deliver workshops to parents and professionals on a wide range of topics including but not limited to, strategies to prevent and respond to challenging behaviors, best practices in early intervention, functional communication training, and enhancing social understanding in individuals with autism.

NC General Assembly Begins Long Session

Photo credit to Mr. T in DC via Flickr.com

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

The North Carolina General Assembly began its long legislative session on January 28, spending the two weeks prior to that organizing committee membership and shifting offices for new members and leaders. This year’s legislative session is off to a slow start. The General Assembly will spend a good portion of this session writing a two-year budget for the state and began Appropriations meetings the week of February 5.

News on the budget is mixed: Medicaid is coming in at, or possibly even under, budget for the year, but tax collections appear to be down about $230 million. Legislators are waiting for April income tax numbers before making major decisions on budget issues. Most projections indicate that while jobs are growing, wages are not, resulting in lower tax collections. The budget hole could grow to the $500-million level. Legislative leaders say the state can cover any budgetary holes this year with rainy day funds and other funds set aside for possible budget overruns. There has been little discussion yet on what recent tax changes might mean for future budget years. Gov. Pat McCrory will likely put out his budget proposal at the end of February. The House will be working on its budget bill first and then passing it to the Senate for changes. ASNC keeps a close eye on budget and tax changes because special education and publicly funded services support people with autism and other developmental disabilities, and the need for such services is growing.

ASNC continues to work with the legislature and other stakeholders on a solution for autism insurance coverage in North Carolina on which everyone can agree. Senate leaders must be prepared to address the issue of insurance coverage, or we will find ourselves in a similar situation to the last two years: House support and/or bill passage, but no final resolution.

Federal Update: ABLE Act Passes Congress, Requires States to Authorize Programs

Congress has passed the ABLE Act, Achieving a Better Life Experience, which allows states to set up savings programs, similar to 529 college savings, but specifically for people with significant disabilities. ABLE savings plans would allow families to save money for a family member’s future support, housing, services, and personal needs without jeopardizing their eligibility for other needed benefit programs. People of any age who acquired their disability before the age of 26 are potentially eligible. SSI and SSDI recipients would be automatically eligible; other people who have significant disabilities will have to meet a disability standard of proof established by Treasury regulations that will be written in 2015. Disability Scoop outlines the ABLE Act here, and the National Disability Institute has an informative, 10-minute video explanation here.

Because each state will need to set up its own ABLE savings program, ASNC is working with the NC General Assembly on authorizing legislation for a state ABLE Act/529 program for people with disabilities. ASNC will be monitoring the legislation closely and will alert you to any need for advocacy.

NC DHHS Workgroups and Opportunities for Feedback

North Carolina’s Department of Health and Human Services (DHHS) has been active in a number of initiatives that address Innovations waivers, Home and Community Based Services standards, and the federal directive on autism services.

DHHS is updating the Innovations Home and Community Based Waiver (formerly the CAP IDD Waiver), which is up for renewal. DHHS has been soliciting feedback from workgroups to determine changes to service definitions within the waiver. Kerri Erb, Senior Director of Programs, has been actively representing ASNC on the committee and urging changes that will benefit people on the autism spectrum. You can view presentations made at waiver workgroups meetings on the DHHS waiver page.

The federal government has published final rules under new Home and Community Based Services standards. The intent is to make community settings for people with disabilities more person-centered and to ensure that people are served in the most integrated settings. You can review the rules and continue to comment. NC has set up workgroups to solicit feedback on the new rules and help providers implement them.

NC DHHS is beginning work on changes to services required under the federal government’s new guidelines on serving people with autism under Medicaid’s Early Periodic Screening Diagnosis and Treatment (EPSDT). The guidelines require states to cover services for autism but do not specify which services or what their timeframe is to make needed changes to state Medicaid plans. ASNC staff members are continuing to provide feedback to DHHS staff regarding evidence-based treatments and services that address Autism Spectrum Disorder.

ASNC encourages you to provide input on the programs that serve you. Information about the various workgroups and ways you can make your voice heard are in one of our recent blog posts.

ASNC Public Policy Targets

ASNC advocates with policymakers on a wide variety of public policy issues in our efforts to create communities where people with autism have the respect, services, and support they need. There are lifelong needs across the entire spectrum and many opportunities for change. Our two-year targets focus on increasing access to services and support, accessible education options, and a system that supports the needs of people on the spectrum. Thank you to everyone who participated in our public policy survey this past year and helped us shape our policy targets. The 2015-2016 targets can be seen here.

Advocating for Autism Issues

Change is not possible without your grassroots efforts! Policymakers need to hear your voice on legislative issues, community needs, challenges you face, and potential solutions. ASNC supports communities in advocating for change and staying informed about public policy issues that affect them. Our Advocacy 101 toolkit is great way to brush up on how policy gets made and how you can have an impact!

If you have questions about public policy issues, please contact Jennifer Mahan, Director of Advocacy and Public Policy, at jmahan@autismsociety-nc.org.

Learning Through Seeing

This article was contributed by Kathleen Dolbee, a parent and ASNC Autism Resource Specialist for Western North Carolina.

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Available in the ASNC Bookstore at http://www.autismbookstore.com

No two minds are exactly alike; each has its own way of learning. What works well for one person may not work as well for another.

For example, some people grasp and remember ideas better when they see pictures or diagrams. Others prefer the written word or the spoken word better still, maybe a combination of these. Children with autism learn in a variety of ways; most are visual learners with an exceptional eye for detail. Jennifer Savner and Brenda Smith Myles, authors of “Making Visual Supports Work in the Home and Community,” make this point: “research has shown that for many children with ASD, one way of learning – learning through seeing – is superior.”

Parents of children with limited language are often eager to use visuals, wanting desperately to find a way to teach their child the power of communication. As users of the Picture Exchange Communication System (PECS) have proven, often a visual becomes the springboard for verbal communication.

But what about the verbal child? Parents of highly verbal children sometimes resist the use of visuals, presuming that because their child can talk, it means that he can communicate. That may be true on a stress-free day or when attempting to teach simple concepts. But stress-free days are few and far between, and as children get older, academic and social concepts become more complex.

Be honest. Do you find that you are having to repeat yourself over and over again? Are you feeling frustrated? Do you sense that your child is frustrated? Savner and Myles note: “The tricky thing … is that your child usually will not say to you, ‘I do not understand. Please give me a visual.’” Yet his behavior may be sending that message loud and clear. Does your child tantrum? Is your child truly independent in daily living skills or is he or she dependent on constant verbal prompting? Does your child ignore your verbal reminders? Does your child have difficulty getting started or completing all the necessary steps of a particular task?

If you and/or your child are frustrated by a communication disconnect, please consider introducing visuals into your daily routine. Even highly verbal children benefit when sequenced routines and abstract concepts are made easier to grasp through the use of visuals. In addition, when children’s independence increases, so does their self-esteem.

If the thought of creating visuals leaves you feeling overwhelmed or discouraged, Savner and Miles suggest starting small, creating just one visual support to see how it works, and then progressing from there.

If you need help, connect with other parents or contact the ASNC Resource Specialist in your community. We’re here to help.

Kathleen Dolbee can be reached at kdolbee@autismsociety-nc.org or 828-236-1547.

Making Visual Supports Work in the Home and Community” is available in the Autism Society of North Carolina Bookstore, your one-stop shop for quality autism resources. Buy from us and support ASNC’s mission!

Make Your Voice Heard on Services in NC

Medicaid Diversion

This article was contributed by Kerri Erb, ASNC’s Chief Program Officer.

In the coming months, we all have many opportunities to help shape future services for people on the autism spectrum in North Carolina. In ongoing community meetings, ASNC has been represented by our staff members and families from local ASNC chapters. Read on for upcoming opportunities for you to join the conversations.

Innovations Waiver Renewal and Workgroups

Many people in NC receive services through the Innovations (formerly known as CAP) waiver. At this time, the state has a stakeholder group reviewing the waiver itself, service definitions, and other elements as the waiver moves to a renewal in January 2016. The group has been discussing new service definitions; changes to current service definitions; financial, quality and utilization issues; resource allocation; care coordination; communication; and education. For more information and a look at the presentations, go to NC MHDDSAS: CAP-MR/DD. In addition to the statewide workgroup, each MCO has an active workgroup made up of individuals, families, and professionals to provide input on the waiver.

Home and Community-Based Services Workgroups

North Carolina also is working on a plan to comply with the new Home and Community-Based Services (HCBS) standards issued by the Centers for Medicare & Medicaid Services (CMS). The new standards require states to change policies for programs such as the Innovations waiver to make sure that people using those services are living and working in the most integrated settings possible while maintaining clinical appropriateness. Tools such as person-centered plans can ensure that individuals have more choice and control over their living situations (such as access to visitors, privacy, individualized social plans, communication tools, etc.), and are in settings that are otherwise “home-like,” while still ensuring the health welfare and safety of the individual.

NC must assess its current program policies and submit a plan by March on how it will make any changes to meet the new requirements. Note that settings such as nursing facilities and intermediate care facilities for the mentally retarded (ICFs/MRs) are not addressed by these new regulations. The services that will have to meet the requirements of the rule are: NC Innovations Supported Employment, NC Innovations Day Supports, and NC Innovations Residential. CAP/DA and CAP Choice (Adult Day Health) will also fall under this ruling.

The NC Department of Health and Human Services (DHHS) will be holding listening sessions around the state for recipients of those services with Courtney Cantrell, Director of Division of Mental Health, Developmental Disabilities and Substance Abuse Services; Jessica Keith, Special Advisor on ADA; and Sandra Terrell, Director of DMA Clinical Policy.

DHHS invites you to:

  • Talk with them and provide valued feedback about the proposed HCBS Transition Plan to help those receiving these services become a full part of their community.
  • Tell DHHS what is working and what needs to change.
  • Make a plan that works for everyone.
  • Help build on the system’s strengths to meet the requirements of the HCBS Final Rule (March 17, 2014).

Sessions

  • February 2, 5-7 p.m., Lincoln County Department of Social Services, 1136 Main St., Lincolnton
  • February 3, 6-8 p.m., Creedmoor Baptist Church, 6001 Creedmoor Road, Raleigh
  • February 9, 6-8 p.m., Eugene James Auditorium, 1717 W. 5th St., Greenville
  • February 10, 6-8 p.m., CenterPoint Human Services, 4035 University Parkway, Winston-Salem
  • February 11, 6-8 p.m., CoastalCare, 3809 Shipyard Blvd., Wilmington
  • February 12, 6-8 p.m., Division of Vocational Rehabilitation, 8 Barbetta Drive, Asheville

If sessions are canceled because of bad weather, DHHS will not be able to reschedule them. Statewide conference calls will be held, and feedback can also be provided by email, fax, telephone or U.S. mail. For more information, please email HCBSTransPlan@dhhs.nc.gov.

ASNC Chief Program Officer Kerri Erb has represented our community in the NC DHHS stakeholder groups mentioned above. We value your input on our efforts to create better services. You can contact Kerri at kerb@autismsociety-nc.org to provide feedback on the Innovations wavier of HCBS regulations, and she will relay your concerns. Or, you may contact DHHS directly at IDDListeningSessions@dhhs.nc.gov (with “waiver” or “HCBS” in the subject line) to provide feedback on the waiver and changes to best meet the needs of individuals with ASD in a flexible and sustainable manner.

Consumer & Family Community Chats

DHHS is also holding forums for consumers and family members with no providers present. Leaders from the Division of Mental Health, Developmental Disabilities and Substance Abuse Services invite you to speak openly about your experience in the system and help them understand what is important to you.

Space is limited; please RSVP to info@ncseg.com or 919-330-0777 for the following sessions:

  • February 3, 2-3:30 p.m., Arc of NC Conference Room, 343 E. Six Forks Road, Suite 320, Raleigh
  • February 9, 2-3:30 p.m., Autism Society of NC, 205 C-D Plaza Drive, Greenville
  • February 10, 2-3:30 p.m., The Enrichment Center, 1006 S. Marshall St., Winston-Salem
  • February 11, 3-4:30 p.m., The Arc of North Carolina Wilmington, 5041 New Centre Drive, Suite 100, Wilmington
  • February 12, 2-3:30 p.m., Autism Society of NC, 306 Summit St., Asheville

LME/MCO Community Gaps and Needs Assessments

In addition to the state, each LME/MCO conducts gaps and needs assessments in their communities each year. LME/MCOs and DHHS use information gathered in these to help shape future services in their areas. Please provide input to the MCO that manages your services (or, if you are waiting for services, the LME/MCO that would manage them).

For example, Alliance’s is currently open. Links to the Alliance LME/MCO Gaps and Needs assessment survey:

Consumers and Families: https://www.surveymonkey.com/s/ABH_ConsumerFamily

Providers: https://www.surveymonkey.com/s/ABH_Providers

Stakeholders: https://www.surveymonkey.com/s/ABH_Stakeholders

Disability Rights of North Carolina Listening Sessions

Disability Rights of North Carolina (DRNC) is also hosting listening sessions across the state to help focus its work. To see the schedule and register, please click here.

In addition to the listening sessions, more information will come out soon regarding the LS settlement you may have read about in the news. For more information in the interim, please click here.

Kerri Erb can be reached at kerb@autismsociety-nc.org or 919-865-5053 or 800-442-2762, ext. 1102.

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