The Charles Lea Center recognizes that navigating a complex system can be overwhelming and time consuming; thus, ASD Connect: A Resource Guide for South Carolina Families & Caregivers aims to connect families and caregivers with the information and resources they need. This resource guide includes brief descriptions of services and provides contact information. The Charles Lea Center believes that every person and family affected by autism is unique. You have the right to learn about all options and then select what you feel is the most appropriate for you. Some of the resources listed in this guide may be right for you and your family, while others may not match your familyâ€™s unique needs. We hope this resource guide helps to answer many of your questions. Please know that if you should have any other questions you can contact us directly at (864) 585-0322 or AustismInfo@CharlesLea.org.
Table of Contents
II. Funding in South Carolina
III. Parent/ Caregiver Resources
V. About the Charles Lea Center
What is autism?
By definition (From the Center For Disease Control – CDC) Autism spectrum disorder (ASD) is a group of developmental disabilities that can cause significant social, communication and behavioral challenges. People with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less. Prevalence: • One in 68 children (in 2000 it was one in 150) have an ASD. • • •
Reported to occur in all racial, ethnic, and socioeconomic groups. Almost five times more common among boys (1 in 42) than among girls (1 in 189) About one in six children in the United States had a developmental disability in 2006-2008, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism.
Treatments: • Early Intervention Services – birth to three- years-old; therapy to help the child walk, talk, and
interact with others. • Behavior and communication approaches: Applied Behavior Analysis (ABA): u Discrete Trial Training- style of teaching that uses a series of trials to teach each step of a desired behavior or response u Early Intensive Behavioral Intervention - type of ABA for very young children with an ASD u Pivotal Response Training - aims to increase a child’s motivation to learn, monitor his own behavior, and initiate communication with others u Verbal Behavior Approach – focuses on language skills • Occupational Therapy- fine motor skills (dressing, eating, bathing), sensory issues • Speech Therapy – communication skills, articulation, social skills • The Picture Exchange Communication System (PECS) – picture symbols to communicate • Dietary approaches –vitamins, minerals, gluten free, etc. • Medication – there are no medications that can cure ASD or even treat the main symptoms; medication might help manage high energy levels, inability to focus, seizures, or depression • Complementary and alternative medicine
Prognosis: (From www.scautism.org) • Some children with autism maintain an age-appropriate educational level and attend general
education classes, while others need specialized educational settings and supports. • It is difficult to predict the future when a child is young, but some individuals with autism learn to live and work independently in the community • Others depend on the support of family and professionals. Adults with autism can benefit from job skills training and social and recreational programs. They may live in a variety of residential settings. Options can include living independently at home, in apartments, or with other family members, as well as supported living arrangements in group homes, supervised apartment settings, and structured residential care.
Age Social/ Language/ Cognitive (Learning, Motor/Physical Emotional Communication thinking problem solving) Development 6 Months
Knows familiar faces and begins to know if someone is a stranger
Likes to play with others, especially parents Responds to other people’s emotions and often seems happy Likes to look at self in a mirror
Responds to sounds by making sounds
Looks around at things nearby
Strings vowels together when babbling (“ah,” “eh,” “oh”) and likes taking turns with parent while making sounds
Brings things to mouth
Responds to own name Makes sounds to show joy and displeasure
Begins to pass things from one hand to the other
Shows curiosity about things and tries to get things that are out of reach
May be afraid of strangers May be clingy with familiar adults Has favorite toys
Understands “no” Makes a lot of different sounds like “mamamama” and “bababababa”
Begins to sit without support When standing, supports weight on legs and might bounce Rocks back and forth, sometimes crawling backward before moving forward
Begins to say consonant sounds (jabbering with “m,” “b”) 9 Months
Rolls over in both directions (front to back, back to front)
Watches the path of something as it falls
Stands, holding on Can get into sitting position
Looks for things he sees you hide
Sits without support
Pulls to stand
Copies sounds and gestures of others
Puts things in her mouth
Uses fingers to point at things
Moves things smoothly from one hand to the other Picks up things like cereal between thumb and index finger
Is shy or nervous with strangers
Responds to simple spoken requests
Cries when mom or dad leaves
Uses simple gestures, like shaking head “no” or waving “bye-bye”
Has favorite things and people Shows fear in some situations
Makes sounds with changes in tone (sounds more like speech)
Says “mama” and Hands you a book when “dada” and he wants to hear a story exclamations like “uh-oh!” Repeats sounds or actions to get attention Tries to say words you say
Explores things in different ways, like shaking, banging, throwing
Pulls up to stand, walks holding on to furniture (“cruising”)
Finds hidden things easily Looks at the right picture or thing when it’s named
May take a few steps without holding on
Copies gestures Starts to use things correctly; for example, drinks from a cup, brushes hair
Puts out arm or leg to help with dressing
Bangs two things together Puts things in a container, takes things out of a container
Plays games such as “peek-a-boo” and “pat-a-cake”
Lets things go without help Pokes with index (pointer) finger Follows simple directions like “pick up the toy”
May stand alone
Age Social/ Language/ Cognitive (Learning, Motor/Physical Emotional Communication thinking problem solving) Development 2 Years
Copies others, especially adults and older children
Gets excited when with other children Shows more and more independence Shows defiant behavior (doing what he has been told not to)
Points to things or pictures when they are named Knows names of familiar people and body parts Says sentences with 2 to 4 words
Follows simple instructions Repeats words overheard in conversation Points to things in a book
Plays mainly beside other children, but is beginning to include other children, such as in chase games
Finds things even when hidden under two or three covers
Stands on tiptoe
Begins to sort shapes and colors
Begins to run
Completes sentences and rhymes in familiar books Plays simple makebelieve games Builds towers of 4 or more blocks
Kicks a ball
Climbs onto and down from furniture without help Walks up and down stairs holding on Throws ball overhand Makes or copies straight lines and circles
Might use one hand more than the other Follows two-step instructions such as “Pick up your shoes and put them in the closet.” Names items in a picture book such as a cat, bird, or dog
Copies adults and friends
Follows instructions with 2 or 3 steps
Can work toys with buttons, levers, and moving parts
Shows affection for friends without prompting
Can name most familiar things
Plays make-believe with dolls, animals, and people
Understands words like “in,” “on,” and “under” Says first name, age, and sex
Does puzzles with 3 or 4 pieces
Takes turns in games Shows concern for crying friend Understands the idea of “mine” and “his” or “hers” Shows a wide range of emotions
Names a friend Says words like “I,” “me,” “we,” and “you” and some plurals (cars, dogs, cats)
Separates easily from mom and dad
Talks well enough for strangers to understand most of the time
May get upset with major changes in routine
Carries on a conversation using 2 to 3 sentences
Dresses and undresses self
Understands what “two” means Copies a circle with pencil or crayon Turns book pages one at a time Builds towers of more than 6 blocks Screws and unscrews jar lids or turns door handle
Climbs well Runs easily Pedals a tricycle (3-wheel bike) Walks up and down stairs, one foot on each step
Applied Behavior Analysis:
In South Carolina, families can access professional ABA services after receiving a diagnosis of autism spectrum disorder in four ways: 1 They can self-pay for services. 2. Children under age 3 may receive ABA therapy through BabyNet.
BabyNet is South Carolina’s interagency system of early intervention services for families who have infants and toddlers, birth to age 3, with developmental delays or conditions associated with developmental delays.
Children diagnosed with autism spectrum disorder who are served by BabyNet may be eligible to receive ABA therapy (at no cost to the family). Families should speak to their child’s early interventionist for more information about applying for this service.
3. Families may receive coverage through their private insurance company if the policy honors Ryan’s Law.
Ryan’s Law requires insurance companies doing business in South Carolina (with four exceptions noted below) to cover up to $50,000 a year in behavioral therapy for children diagnosed by age 8 (coverage is available until a child turns 16). It also prohibits insurance companies from refusing to cover someone because that person has autism.
People employed by the federal government and thus covered by Tricare (military insurance) or one of the FEHBP plans (federal civilian insurance).
• People who get insurance through a self-insured company. Parents/caregivers MUST check directly with their employer to find out if their company is self-insured.
• People who get insurance through a small business (fewer than 50 people).
• People who buy individual insurance policies.
Families should contact their insurance company to determine if they are eligible for services under Ryan’s Law.
4. Children may receive services through the South Carolina PDD Waiver.
South Carolina PDD Waiver
The Pervasive Developmental Disorder Waiver provides for early intensive behavioral intervention services to children (ages 3-10) diagnosed with autism spectrum disorder or have been previously diagnosed with a PDD, including autism and Asperger’s Syndrome. These services are limited to non-educational settings.
• Children must be ages 3-10.
• Children must be diagnosed with a PDD before the child turns 9 years old. The diagnosis must be made by a qualified professional. • Families must meet eligibility criteria for either income-based or TEFRA Medicaid, or they must provide documentation of application (even if denied).
Families should talk to their child’s service coordinator or another representative from the Department of Disabilities and Special Needs (DDSN) for a full explanation of waiver eligibility requirements.
To Apply for PDD Waiver Services • Families Currently Receiving DDSN Services: Contact the child’s service coordinator and request that
the child go through the intake process for the PDD Waiver.
• Families Not Receiving DDSN Services: Call the PDD Waiver Intake and Referral toll free number (1-888-576-4658).
Department of Disabilities and Special Needs
The South Carolina Department of Disabilities and Special Needs (DDSN) is the State Department through which individuals must meet eligibility in order to receive Case Management and related services. Families can call 1-800-289-7012 to begin this process. Steps on applying for services and other information can also be found on the DDSN website: www.ddsn.sc.gov/consumers/Pages/default.aspx
Applying for Medicaid may aid in the eligibility process. Information on eligibility criteria and application information can be found on the South Carolina Department of Health and Human Services website: www.scdhhs.gov/Getting-Started and www.scdhhs.gov/eligibility-groups/disabled-children
Adult children may also be eligible for Supplemental Security Income (SSI). More information is available here: www.ssa.gov/disability/
There are agencies in South Carolina dedicated to assisting families and individuals impacted by ASD. Family Connection of South Carolina (www.familyconnectionsc.org) has created several tools that are incredibly valuable. • A comprehensive Parents’ Resource Guide, providing information and assistance for wherever a family finds themselves on their journey. www.familyconnectionsc.org/uploads/1/7/2/7/17273542/parents_resource_guide.pdf • A Care Notebook to help families keep track of medical information. www.familyconnectionsc.org/uploads/1/7/2/7/17273542/2014_care_notebook.pdf The South Carolina Autism Society (www.scautism.org) also hosts a wealth of information and assistance for families and caregivers regarding: • Programs: scautism.org/what-we-do Here families can find detailed information on programs and supports offered by the South Carolina Autism Society. • ABA Therapy: scautism.org/getting-started/aba-therapy What is Applied Behavior Analysis? Behavior analysis focuses on the principles that explain how learning takes
place. Positive reinforcement is one such principle. When a behavior is followed by some sort of reward, the behavior is more likely to be repeated. Through decades of research, the field of behavior analysis has developed many techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning.
Applied behavior analysis (ABA) is the use of these techniques and principles to bring about meaningful and positive change in behavior. (autismspeaks.org)
• Supports: scautism.org/getting-started/support
Information can be found here regarding parent support groups in different areas of the State. • Guardianship and trusts: www.scautism.org/pdf/SCAS%20Guardian%20Handbook%20Final.pdf Many families worry about how best to protect their child and what legal action, if any, they should take. The South Carolina Autism Society created a handbook to offer families information and things to consider when looking at such decisions. This handbook should not be considered legal advice or an endorsement for any attorney. (scautism.org) The Autism Academy of South Carolina offers free parent training workshops. The topics vary from month to month. More information and registration opportunities can be found at: autismacademyofsc.org/services The Department of Disabilities and Special Needs provides links to multiple South Carolina agencies as well as national resources on their website at: ddsn.sc.gov/Pages/RelevantLinks.aspx ProParents of South Carolina (proparents.org) is a non-profit organization that provides information, training, conferences, advocacy and other resources to parents and professionals. This website also provides information about SC Adult Sibling Leadership Network, a group that gives adult siblings of those with disabilities a place to network with others in similar situations. Autism Speaks (www.autismspeaks.org) is a large autism science and advocacy organization. • Their website contains many resources for families in their resource library (www.autismspeaks.org/family-services/resource-library) • As well as toolkits available for download. (www.autismspeaks.org/family-services/tool-kits) The McCarthy Teszler School provides services to students with disabilities from all seven school districts in Spartanburg County. Their website has many links and resources for families, including an Autism Support Corner: mtz.spartanburg7.org/support-services/autism-services
Technology is always evolving and it opens new doors every day. It does the same for people with autism. For these individuals, technology can increase their ability to communicate. It can assist in the development of social skills and enhance their ability to learn. There are new software and apps being developed all the time. Autism Speaks has developed a comprehensive listing of autism apps and technology which can be accessed here: www.autismspeaks.org/autism-apps The South Carolina Assistive Technology Program (SCATP) is a federally funded program focused on getting technology into the hands of people with disabilities to allow them to be more independent. Their goal is ‘to enhance independence, productivity and quality of life for all South Carolinians through access to assistive technology devices and services.’ To that end they provide a device loan and demonstration program, many trainings, technical assistance etc. Links to all of these resources can be found at: www.sc.edu/scatp/index.htm The South Carolina Autism Society has a dedicated Learning Lab, Paula’s Place, at their office in West Columbia, SC. Paula’s Place is a learning lab dedicated to individuals with autism of all ages, parents, educators, paraprofessionals, and therapists to learn how to use various software and how to create supports for school and home use. Information regarding the lab, trainings, as well as hours of operation can be found at: scautism.org/what-we-do/paulas-place-learning-lab-2 There are many opportunities to allow individuals with autism to live more independently, and technology can aid in that in the physical environment as well, helping to ensure things are as safe as possible. The Charles Lea Center has collaborated with Simply Home, an innovative company based in Asheville North Carolina, to utilize technology that allows for the least invasive support system as possible for their individuals. More about the services provided by Simply Home can be found at: www.simply-home.com
Residential Assistive Technology Empowering Children and Families How does technology at home support my child? • • • • •
It promotes independence, safety, and security through prompting or by notifications to family members. It uses the family’s daily routines and activities to provide feedback when something isn’t accomplished or if something happens outside of the normal routine. For example, if a child doesn’t get back in bed after toileting at night. It familiarizes the child with technology as a natural support so when the child becomes a young adult and moves away from home, technology will seem like a regular part of the new routines and activities of daily living. It helps children access new skills that might otherwise not be recognized. It creates an opportunity for a child to practice skills in the safety of the home—in essence, offering the “dignity of risk.” A child can practice skills and learn from mistakes before being out in community living.
How does technology at home support our family?
• • •
It creates natural opportunities for teaching/learning new skills for independence. It becomes a natural support for reminders regarding the daily routines in the home. It provides peace of mind for all involved (and by peace of mind, we mean a good night’s sleep!).
What are the types of technology that our child might use? • • • • •
Wireless sensor systems that provide prompts and notifications around daily routines Environmental controls that support children with physical disabilities in completing tasks like turning lights on/off and opening doors Medication dispensers that teach youth how to take daily medication while being supervised by the family Personal Emergency Response (PERS) for families and children should they need assistance quickly Apps for tablets/iPads that provide tools for learning, organization, and leisure
More about the services provided by Simply Home can be found at: www.simply-home.com
The Charles Lea Center has been assisting men, women and children with special needs and/or developmental and/or intellectual disabilities and/or chronic medical conditions since 1971. As a vital community resource, the Charles Lea Center provides innovative services coupled with the latest in technology that often cannot be found elsewhere in South Carolina. Our philosophy is pretty straightforward at the Charles Lea Center, we support people of all ages where they live, work and play. We strive to discover what people really want and help them to achieve those goals. Our comprehensive supports are based on the principles of person-centered thinking, meaning the men, women and children who receive services, and oftentimes their families, direct the services they want and need. The Charles Lea Center provides lifelong services including: residential services, work training/opportunities, day services, early intervention and case management at three campuses in Spartanburg County. In addition, the Charles Lea Center owns, operates and manages more than 60 homes and apartments in Spartanburg County. The Charles Lea Center, a non-profit, employs approximately 500 people, provides services to more than 1500 men, women and children and has an average annual budget in surplus of $27 million. There are few places that offer the breadth of services that the Charles Lea Center does.
Our Mission It is the Charles Lea Center’s mission to be the organization committed to supporting people with disabilities and special needs where they live, work and play. 195 Burdette Street • Spartanburg, SC 29307 www.CharlesLea.org • AutismInfo@CharlesLea.org