5 2 1 0 Intellectual and Developmental Disabilities

5 -2 -1 -0 Intellectual and Developmental Disabilities Toolkit JENNIFER GROOS, MD FAAP BETSY LIN MELISSA CLARKE-WHARFF 12/04/18

Today’s Panelists Jennifer Groos, MD FAAP, Iowa Chapter American Academy of Pediatrics Committee on Obesity Betsy Lin, Iowa Department of Education, Education Consultant, Bureau of Learner Strategies and Supports Melissa Clarke-Wharff, Courage League Sports, Founder/Executive Director,

Objectives 1) Become familiar with the 5 -2 -1 -0 Healthy Choices Count! Intellectual and Developmental Disabilities (I/DD) Toolkit. 2) Understand healthy eating and physical activity challenges faced by children with I/DD. 3) Learn how to effectively partner with schools to support healthy habit development for children with I/DD. 4) Learn about important referral resources to support healthy habit development for children with I/DD.

5 -2 -1 -0 Healthy Choices Count! Intellectual and Developmental Disabilities (I/DD) Toolkit. OBJECTIVE 1

5 -2 -1 -0 More than a Message HEALTH MESSAGE IN ACTION Change environments and policies to make the healthiest choice the easiest choice!

10 Strategies for Success 1 Limit unhealthy choices for snacks and celebrations; provide healthy choices. 2 Limit or eliminate sugary drinks; provide water. 3 Prohibit the use of food as a reward. 4 Provide opportunities to get physical activity every day. 5 Limit recreational screen time. 6 Participate in local, state, and national initiatives that support healthy eating and active living. 7 Engage community partners to help support healthy eating and active living. 8 Partner with and educate families in adopting and maintaining a lifestyle that supports healthy eating and active living. 9 Implement a staff wellness program that includes healthy eating and active living. 10 Collaborate with Food and Nutrition Programs to offer healthy food and beverage options.

Inclusive Health Grant to Iowa Chapter of the AAP to Support Healthy Weight for Children with Intellectual Disabilities Awarded by American Academy of Pediatrics Institute for Healthy Childhood Weight (AAP IHCW) Sponsored by AAP IHCW with support from Special Olympics Support from IMS and United Way of Central Iowa and Healthiest State Initiative

Project Goals 1) Inclusion of the children with intellectual and developmental disabilities is lacking in the current 5 -2 -1 -0 Healthy Choices Count campaign in our state 2) Build collaborative relationships between community partners and health care providers to more effectively address the needs of the ID community. 3) Convene stakeholders in multiple sectors to adapt the Let’s Go! Intellectual and Developmental Disability Toolkit (developed in Maine) for use in Iowa 4) One page handout for statewide healthy eating and active living resources for the population with intellectual disabilities will be developed and added to the toolkit

5 -2 -1 -0 I/DD Toolkit Revision Team Iowa Chapter of the American Academy of Pediatrics- Committee on Obesity Heartland AEA ASK Resource Blank Children's Hospital Child Health Specialty Clinics Child. Serve Courage League Sports Harkin Institute Healthiest State Initiative (HSI) Iowa Department of Education Iowa Department of Public Health Iowa Medical Society Look Cook and Eat Special Olympics Iowa University of Iowa Center for Disabilities and Development United Way of Central Iowa Special thanks to Ingrid Williams, HSI Intern

www. iowamedical. org/iowa/Childhood_Obesity

http: //www. iowahealthieststate. com/5210

Understand healthy eating and physical activity challenges faced by children with I/DD. OBJECTIVE 2

Obesity is a Chronic Disease A complex disease condition mediated through the interplay of multiple genetic, biologic, metabolic, behavioral, social, economic and cultural determinants. Most prevalent chronic disease in childhood Obesity 12. 7 million vs. Asthma 6. 2 million

Iowa Statistics § Adult Data § 65. 9% of Iowa adults have overweight or obesity § 36. 4% of Iowa adults have obesity-4 th in the nation § Source: CDC § Youth Data § 29. 9% of children 10 -17 have overweight or obesity § Source: stateofobesity. org/children 1017 § 17% of youth have obesity-10 st in the nation § Source: Robert Woods Johnson

Obesity and Disabilities https: //www. cdc. gov/ncbddd/disabilityandhealth/obesity. html

Possible Challenges Facing People with Disabilities A lack of healthy food choices. Difficulty with chewing or swallowing food, or its taste or texture. Medications that can contribute to weight gain, weight loss, and changes in appetite. Physical limitations that can reduce a person’s ability to exercise. Pain. A lack of energy. A lack of accessible environments (for example, sidewalks, parks, and exercise equipment) that can enable exercise. A lack of resources (for example, money, transportation, and social support from family, friends, neighbors, and community members).

Healthy Eating Challenges Eating Problems Oral-Motor Problems Caloric Needs Food Rewards Mealtime Behavior Self-Awareness

Physical Activity Challenges Functional Limitations Inclusivity Attitudes Self-Monitoring Safety Concerns

Health Care Challenges for Children with Intellectual and Developmental Disabilities 1) Disparities in Care ◦ May not receive healthy habit counseling 2) Barriers to Care ◦ Providers may lack training and experience 3) Medication ◦ May interfere with appetite and metabolism 4) Lack of Training ◦ Community service providers may not receive training on healthy eating and active living behaviors 5) Multiple Services and Transitions ◦ Difficult to coordinate consistent messages/strategies to promote healthy eating and active living across settings

MAKE REFERRALS FOR SERVICES TO SUPPORT HEALTHY HABITS for Patients with Intellectual and Developmental Disabilities Children with intellectual and developmental disabilities (I/DD) often have different needs related to their diagnoses. No single provider is expected to address all of these needs, but a child’s health care provider should become familiar with available services and be able to refer a patient to professionals who can help address challenges.

Healthy Eating Referrals

Physical Activity Referrals

Learn how to effectively partner with schools to support healthy habit development for children with I/DD. OBJECTIVE 3 BETSY LIN, IOWA DEPARTMENT OF EDUCATION, EDUCATION CONSULTANT, BUREAU OF LEARNER STRATEGIES AND SUPPORTS

Definitions INTELLECTUAL DISABILITY (ID) is a group of conditions characterized by significant limitations in intellectual functioning (i. e. reasoning, learning, problem solving) and in adaptive behavior (i. e. social and practical skills). This disability originates before the age of 18. 1 DEVELOPMENTAL DISABILITY (DD) is an umbrella term that includes intellectual disability as well as other disabilities that are apparent during childhood until the age of 22. DDs are likely to be lifelong and can be physical, cognitive, or both. Some examples of DDs include autism spectrum disorder, cerebral palsy, Down syndrome, epilepsy, fetal alcohol syndrome, fragile X syndrome, and spina bifida. 1 ELIGIBLE INDIVIDUAL is a child receiving special education services.

Services and Plans BEHAVIOR INTERVENTION PLAN (BIP) is a written plan developed by a Board Certified Behavior Analyst or psychologist or other certified professional to help a child replace problem behaviors with desirable behaviors. It includes a description of the problem behavior, an explanation of why the behavior occurs, and intervention strategies. It can be a stand-alone document or can be attached to an existing education or service plan. 2 EARLY ACCESS is a partnership between families with young children, birth to age three, and providers from the Department of Education, Public Health, Human Services, the Child Health Specialty Clinics, and other community partners. The purpose of this program is for families and staff to work together in identifying, coordinating, and providing needed services and resources that will help the family assist their infant or toddler to develop and learn.

Services and Plans INDIVIDUALIZED EDUCATION PROGRAM (IEP) is a process where the parents/guardians and school work together to create an IEP for a child, age 321, with a disability who needs a specialized instruction. The plan that is developed is reviewed and revised in accordance with special criteria described in the Individuals with Disabilities Education Act. It is based upon the child's individual needs and is developed at an IEP meeting. The plan is reviewed at least once a year and can be revised based on changing needs. At least every three years a reevaluation is conducted to determine ongoing eligibility. 4 504 PLAN is a plan that provides services (academic and non-academic) and changes to the learning environment to meet the needs of a child with disabilities as adequately as other students.

Services and Plans INDIVIDUALIZED FAMILY SERVICE PLAN (IFSP) ◦ written plan for providing early intervention services for a child with I/DD and their family ◦ legally required for all children birth through age 2 who receive services through the Early Access, an intervention program for infants and toddlers with disabilities (Part C of the Individuals with Disabilities Education Act). INDIVIDUALIZED HEALTH PLAN (IHP) ◦ confidential, written, preplanned and ongoing special health service in the educational program. ◦ includes assessment, nursing diagnosis, outcomes, planning, interventions, evaluation, student goals, if applicable, and a plan for emergencies to provide direction in managing an individual's health needs. ◦ updated as needed and at least annually. Licensed health personnel develop this written plan with collaboration from the parent or guardian, individual’s healthy care provider or education team. .

Services and Plans SPECIAL EDUCATION is defined in the Individuals with Disabilities Education Act as “specially designed instruction, at no cost to parents, to meet the unique needs of a child with a disability, including— (i) instruction conducted in the classroom, in the home, in hospitals and institutions, and in other settings; and (ii) instruction in physical education. ” TRANSITION SERVICES are services that schools are required to provide under the Individuals with Disabilities Education Act for students with disabilities to help them prepare for life after high school. Services must begin no later than age 14. These services are described in the IEP.

USE EDUCATION AND SERVICE PLANS Support Healthy Habit Goals for Children with Intellectual and Developmental Disabilities Education and service plans, (IFSP), (IEP), or (IHP), ◦ contain recommended goals, services, and accommodations for children with intellectual and developmental disabilities (I/DD). ◦ Goals, services, and supports provided through an IEP must be based on a need as a result of the child's disability in order to ensure a Free and Appropriate Public Education (FAPE). A child’s caregivers, teachers, and service providers assess the child’s needs and meet annually with families to create updated plans. Including goals related to healthy eating and physical activity in a child’s education and service plans ensures that the child receives appropriate services to address their needs.

USE EDUCATION AND SERVICE PLANS Guiding Questions: Healthy Eating • Does the child eat at least 5 fruits and vegetables each day? • Does the child eat a very limited number of foods? • Is the child oversensitive to the taste, texture, smell, temperature, or brand of food? • Does the child have difficulty chewing or swallowing? • Does the child display difficult behavior at snack and mealtimes? • Does the child eat too quickly or too slowly? Physical Activity • Does the child have the same basic motor skills as their peers? • What skills are strongest? What skills are weakest? • What skills does the child need to work on most to improve independence? • What are the child’s personal goals for sport or recreation?

USE EDUCATION AND SERVICE PLANS Other Tips: Set goals that are both measurable and attainable. Include non-food rewards as strategies to reinforce desirable behaviors and help reach goals. Write these into a child’s plans. Seek guidance from a child’s health care provider. You may request a statement including the child’s diagnosis and suggested goals related to nutrition or physical activity.

Use Transition Plans Once an eligible individual turns 14, the IEP must address the transition supports and services needed as a result of the individual's disability. People with I/DD are eligible for different types of services prior to turning 14 years old, and may no longer receive the support they are used to. A comprehensive transition plan can ease the shift from high school to adult life. You can help prepare a young person to lead a healthier, more independent life after high school by including healthy eating and physical activity goals needed as a result of the individual's disability in the IEP's transition supports and services

Use Transition Plans Guiding Questions for Setting Healthy Habit Goals: • Does the student understand the 5 -2 -1 -0 message? • Does the student understand the difference between healthy and unhealthy choices? • Can the student plan a healthy meal and follow simple recipes to make healthy meals? • Does the student understand how to read food labels and make healthy choices when grocery shopping? • Is the student aware of different places to buy healthy food in the community? • Does the student have basic food handling and kitchen safety skills? • Can the student identify various places and programs to be physically active in the community? • Can the student complete a membership application for a local recreation facility? • Can the student use public transportation to access local recreation facilities? • Can the student navigate local recreation facilities and communicate with personnel? (e. g. find bathrooms and changing rooms or ask about schedules and fees) • Can the student inquire about any equipment or activity modifications that he or she needs?

Everyone Plays a Role! Educators can ensure a student has a basic understanding of proper nutrition. Everyone on a child’s team can address healthy habit goals in a young person’s transition plan. Physical Education Teachers can help a student find opportunities for physical activity outside of school and identify skills a student needs to develop in order to stay active into adulthood. Speech and Language Pathologists or Social Workers can work with a student to develop the social skills needed to access community resources. Health Care Providers can work with a student to set personal healthy habit goals. Occupational Therapists can work with a student to enhance fine motor skills for use in cooking. Case Managers can align healthy habit goals in the IEP transition plan with goals in the student’s Individualized Treatment Plan. Families can model healthy habits and identify ways their child can become more independent.

LEGAL REQUIREMENTS for Including Children with Intellectual and Developmental Disabilities in Physical Activity Three documents govern the inclusion of children with intellectual and developmental disabilities (I/DD) in physical activity: • Section 504 of the Rehabilitation Act of 1973 • Office for Civil Rights (OCR) Dear Colleague Letter of 2013 • Individuals with Disabilities Education Act (IDEA) of 2004

LEGAL REQUIREMENTS for Including Children with Intellectual and Developmental Disabilities in Physical Activity Section 504 of the Rehabilitation Act of 1973 A federal law designed to protect the rights of individuals with disabilities in programs and activities that receive federal assistance, including all elementary and secondary public schools. According to this law: • All students with disabilities must be provided with physical education. • All students must have the same opportunities to engage in extra-curricular athletic activities. U. S. Department of Education Office for Civil Rights (OCR). Protecting Students with Disabilities, Frequently Asked Questions About Section 504 and the Education of Children with Disabilities. U. S. Department of Education. www 2. ed. gov/about/offices/list/ocr/504 faq. html. Accessed on July 5, 2016.

LEGAL REQUIREMENTS for Including Children with Intellectual and Developmental Disabilities in Physical Activity Office for Civil Rights (OCR) Dear Colleague Letter of 2013 Written in response to reports that schools were not complying with requirements to offer students with disabilities the same opportunities to be as physically active as their non-disabled peers. The letter recommends that school districts: • “. . . work with their athletic associations to ensure students with disabilities are not denied an equal opportunity to participate in interscholastic athletics. ” • “. . . (do) not rely on generalizations about what students with a type of disability are capable of—one student with a certain type of disability may not be able to play a certain type of sport but another student with the same disability may be able to play that sport. ” • “. . . (make) reasonable accommodations—to ensure (a student has) an equal opportunity to participate. ” U. S. Department of Education Office for Civil Rights (OCR) Dear Colleague Letter. Office of the Assistant Secretary. http: //www 2. ed. gov/about/offices/list/ocr/letters/colleague-201301 -504. pdf. Accessed on July 5, 2016.

LEGAL REQUIREMENTS for Including Children with Intellectual and Developmental Disabilities in Physical Activity Individuals with Disabilities Education Act (IDEA) of 2004 A federal law that requires schools to serve the educational needs of students with disabilities. According to this law: • Schools are required to provide students with a “free and appropriate public education” in the “least restrictive environment. ” • Physical education is a requirement for students who receive special education. U. S. Department of Education. Building The Legacy of IDEA 2004. idea. ed. gov. Accessed on July 5, 2016.

Partnering with School Teams to support healthy eating and active living accommodations. Education and service plans, including the Individualized Family Service Plan (IFSP), Individualized Education Program (IEP), and Individualized Treatment Plan (ITP), include goals, services, and accommodations for children with intellectual and developmental disabilities (I/DD). Goals, services, and supports provided through an IEP must be based on need as a result of the child's disability in order to ensure a Free and Appropriate Public Education (FAPE). Health care providers can play an important role by contributing information helpful to set healthy habits goals to include in these plans. Health care providers should remind families that their recommendations should be considered by the IEP team but are not required for the team to adopt.

What to Do • Recommend goals for education and service plans that align with goals identified through your conversation with patients using the ‘ 5 -2 -1 -0 Healthy Habits Questionnaire. " • Add any other goals related to healthy eating, non-food rewards, physical activity, screen time, or sugary drinks. • Review the ‘Use Education and Service Plans to Support Healthy Habit Goals for Children with I/DD’ handout in the ‘Getting Started’ section of this toolkit to learn more about how to write goals for each type of plan. • Review the ‘Use Transition Plans to Support Healthy Habits for Teens and Young Adults with I/DD’ handout in the ‘Getting Started’ section of this toolkit. Talk to patients about how to be responsible for their own health, and recommend healthy eating and active living goals for transition needs based on the individual's disability.

Why Recommend Healthy Eating and Physical Activity Goals • Health care providers are trusted and respected by families and the professionals who make up a child’s support team. Your advice will go a long way! • Education and service plans are legal documents, so the professionals working with a child with I/DD will be sure to work toward the goals outlined in these documents. • Education and service plans are referred to throughout the year, so progress toward goals will be tracked.

How to Recommend Healthy Eating and Physical Activity Goals • Use the ‘Health Care Provider Statement Recommending Healthy Habit Goals. ’ Write a statement and give it to a child’s parents or caregivers to share with the rest of the child’s team. • Attend meetings with other members of a child’s support team whenever possible. • Build relationships with other team members and play an active role in developing education and service plans.

Learn about important referral resources to support healthy habit development for children with I/DD. OBJECTIVE 4

HOW TO MAKE PHYSICAL ACTIVITY INCLUSIVE for Children with Intellectual and Developmental Disabilities • Tips to Adapt Physical Activities to Include Children with I/DD • Overcoming Barriers to Including Children with I/DD in Physical Activity • Social Inclusion and Physical Activity • Zones, Stations, and Relays • Try Structured Recess • Principles of LET US Play

TIPS TO ADAPT PHYSICAL ACTIVITIES to Include Children with Intellectual and Developmental Disabilities Demonstrate activities. Provide clear instructions. Use visual aids. Change the rules of some games to give each child a chance to succeed. Play games that emphasize cooperation rather than competition.

SOCIAL INCLUSION AND PHYSICAL ACTIVITY Create conditions that foster positive relationships among children Be a role model Build a child’s social standing Make relationships a priority Use peers as a resource

Resources Courage League Sports is a non-profit adaptive sports and recreational facility that offers year-round programming for children and adults with physical, cognitive or emotional disabilities. By adapting the pace, equipment, or nature of an activity, Courage League can provide a safe and accessible environment where participants can go at their own speed. Courage League’s programs and activities are available through program membership. https: //www. courageleaguesports. com Gi. Gi’s Play. House Gi. Gi’s Playhouse provides free programs that are educational and therapeutic in nature to individuals with Down syndrome from birth through adulthood, their families and the community. Gi’s Playhouse offer more than 25 therapeutic and educational programs that advance literacy, math skills, motor skills and more. Gi’s Playhouse is able to provide these programs free of charge to individuals in Cedar Rapids, Des Moines, the Quad Cities and Sioux City. https: //gigisplayhouse. org/locations

Resources Look, Cook, Eat (LCE) LCE is a digital how-to cooking resource designed for people with intellectual disabilities to help promote an independent lifestyle. Through videos, images, and voice-over, LCE presents simple recipes in an easy-to-follow format that features dishes for any meal of the day, all of which can be accessed as full menus (main dish, side dish, dessert or drink) or as individual items. Emphasis is placed on using fresh or frozen fruits and vegetables, lean proteins, and whole grains, but presenting them in dishes that are familiar and popular (pizza, sliders, sandwiches, etc. ). LCE is available by membership only and members have access to nearly 200 tried-and-tested recipes as well as any new content that is loaded to the site throughout the year. https: //www. lookcookandeat. com Special Olympics Iowa Through the power of sports, people with intellectual disabilities discover new strengths and abilities, skills and success with Special Olympics Iowa. Our athletes find joy, confidence and fulfillment — on the playing field and in life. They also inspire people in their communities and elsewhere to open their hearts to a wider world of human talents and potential. There are regional directors available to assist on how to join Special Olympics Iowa. http: //www. soiowa. org/get-involved/become-and-athlete/

Resources Ask Resource Center ASK (Access for Special Kids) Resource Center serves as the state of Iowa’s parent training and information center for families of children with disabilities. We are a family-focused, nonprofit organization whose mission is to empower individuals with disabilities and their family members by providing innovative and collaborative advocacy, training, resources, and support. ASK creates an annual Iowa Summer Camp List to make it easier for Iowa kids with disabilities to access all the summer fun they desire. http: //askresource. org/resources/camp-list/ Child Health Specialty Clinics (CHSC) CHSC's Registered Dietitians provide families of children with special health care needs a one-time nutrition assessment at a provider's request with follow-up care coordination as needed. CHSC also facilitates nutrition-focused system building activities including training and education on topics specific to children and youth with special health care needs. To contact the CHSC Nutrition team, visit: https: //chsciowa. org/contact-us.

Resources Blank Children’s Hospital Eating a healthy and balanced diet is one of the best things you can do for your body. It gives you the energy to do the things you enjoy. The Nutrition Centre located at Iowa Methodist Medical Center, Blank Children's Hospital and Iowa Lutheran Hospital offers a variety of services and programs including a staff of registered dietitians with experience and expertise that will help you and your family build a healthy lifestyle. Pediatric therapy services are available to address speech, occupational and physical therapy needs. https: //www. unitypoint. org/blankchildrens Child. Serve helps children with special healthcare needs improve motor skills, access their world, play, and have fun through a variety of programs including our physical, occupational and speech therapies including a Pediatric Rehabilitation Medicine Clinic and Developmental Clinic as well as Adaptive Equipment, Orthotics, Respite, Supported Community Living and aquatics programs. Child. Serve Day Health provides weekday care to children with complex medical needs, complete with therapy services on-site during the day. Child. Serve’s comprehensive autism program includes Autism Day Health, Medical Nutrition Therapy, Autism Intensives, Family Education, Life Skills, and more – all designed specifically around the needs of children and young adults who have autism. www. childserve. org.

Review 1) Become familiar with the 5 -2 -1 -0 Healthy Choices Count! Intellectual and Developmental Disabilities (I/DD) Toolkit. 2) Understand healthy eating and physical activity challenges faced by children with I/DD. 3) Learn how to effectively partner with schools to support healthy habit development for children with I/DD. 4) Learn about important referral resources to support healthy habit development for children with I/DD.

Thank You Questions?