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 Providing those with Down Syndrome with proper exercise and nutrition not only reduces their risk of obesity but prevents any further cardiac issues                                                                                                                      -Incorporate a fitness plan which allows the individuals to expel energy and lose excess weight                                                                                                           -Reduction of sweets provides less dental problems                                                                                                                          -Being educated on what to eat allows them to make good choices and hold responsibility                                                                                                       -Incorporation of proper nutrition and exercise will ensure a longer, happy life

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 Providing those with Down Syndrome with proper exercise and nutrition not only reduces their risk of obesity but prevents any further cardiac issues                                                                                                                      -Incorporate a fitness plan which allows the individuals to expel energy and lose excess weight                                                                                                           -Reduction of sweets provides less dental problems                                                                                                                          -Being educated on what to eat allows them to make good choices and hold responsibility                                                                                                       -Incorporation of proper nutrition and exercise will ensure a longer, happy life

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(CDC, 2017)

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Awareness needs to be raised for this population because they are disregarded                                   -Genetic health problems place these individuals at high risk for future health problems                                                                              -Do not receive proper education in which pertains to these individuals in order to reduce health risks -Learning difficulties                                                                            -Do not receive preventative care (ex: cardiac screening)                                                                    -Shorter attention spans

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Awareness needs to be raised for this population because they are disregarded                                   -Genetic health problems place these individuals at high risk for future health problems                                                                              -Do not receive proper education in which pertains to these individuals in order to reduce health risks -Learning difficulties                                                                            -Do not receive preventative care (ex: cardiac screening)                                                                    -Shorter attention spans

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(Healthy People 2020,2017)

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 Developmentally disabled is considered an impairment or disabling of an individual’s physical, learning, language or behavioral condition.                               -18.7% of the United States is developmentally disabled (56.7 million people)                                                                                                                                          - Being developmentally disabled does not decrease what they are capable of accomplishing                                                                                                                             -What defines being disabled derives from the environment in which they live in (community helping them)                                                                                                  -An example of a Developmental Disability is Down Syndrome. It can range on a spectrum of mild which one can function normally to high in which they have no control of their body.                                                                                            										        (Healthy People 2020,2017)

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 Developmentally disabled is considered an impairment or disabling of an individual’s physical, learning, language or behavioral condition.                               -18.7% of the United States is developmentally disabled (56.7 million people)                                                                                                                                          - Being developmentally disabled does not decrease what they are capable of accomplishing                                                                                                                             -What defines being disabled derives from the environment in which they live in (community helping them)                                                                                                  -An example of a Developmental Disability is Down Syndrome. It can range on a spectrum of mild which one can function normally to high in which they have no control of their body.                                                                                            										        (Healthy People 2020,2017)

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Alexis Blachowski

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Ease Into Fitness: Beginner Workout for People with Developmental Disabilities

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This upbeat workout conditions the whole body. Developed by disability fitness specialists, it includes sections on warm-up, flexibility, aerobics, strength and balance, and cool down. Go to http://www.irised.com/products/ease-into-fitness for information and educational products. Beginner Workout for People with Developmental Disabilities.

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Nutrition Standards of Care for Use by Personal Assistants, Service Providers, Healthcare Providers, Nutrition Professionals, and Family Members
The goal of this Nutrition Standards of Care is to promote quality food and nutrition supports for adults with intellectual and/or developmental disabilities (I/DD). These standards and practice guidelines are designed to help personal assistants, direct service staff and others to create and maintain environments that promote all three levels of healthy nutrition:
Level 1: Adequate Nutrition
Level 2: Individualized Nutrition
Level 3: Health-Promoting Nutrition
Research shows that a healthy diet would improve the quality and length of most individuals' lives. Poor diet is related to obesity and illnesses such as cardiovascular disease, cancer, diabetes mellitus, and hypertension.

Individuals with primary disabilities often experience "secondary conditions" - additional physical and psychological problems that limit a person's enjoyment of life and participation in activities. Health research conducted with adults who have I/DD shows that diet affects many of their most frequently reported secondary conditions, such as fatigue, weight problems, and constipation or diarrhea. Proper nutrition can increase these individuals' quality of life by improving existing secondary conditions and
preventing additional conditions from developing.

Personal assistants and others responsible for nutrition or planning and preparing meals for adults with I/DD should read the Standards of Care and understand how to implement them. Training in safe food handling practices and basic nutrition is necessary. The Resources section lists food safety and basic nutrition training materials, including some designed specifically for supported living staff.

Minimum Standards of Care for Adults with I/DD:

1. Provide health-promoting food and nutrition supports.
2. Provide information, knowledgeable encouragement, and positive social/instrumental support (assist in grocery shopping, cooking, etc.) to help individuals make good food choices.
3. Support participation in activities that encourage healthy eating and physical activity.

Three Levels of Standards: The goal of these Standards is to ensure that individuals with I/DD receive quality food and nutrition that promotes their health and participation in activities. There are three levels of standards necessary to achieve quality food and nutrition supports. Your role is to help implement the standards at each level, so that each individual:

Level 1 - Has a diet that is safe and nutritionally adequate.

Level 2 - Has a diet that addresses his or her special needs.

Level 3 - Is encouraged to eat recommended portions of healthy foods associated with lower risk for common chronic diseases and conditions.

The Tree of Good Eating visually represents the three levels of the Standards of Care. The root system is the community and support people who follow the minimum standards for quality food and nutrition. The trunk is the Level 1 Adequate Diet that is the foundation for quality nutrition. The branches are the Level 2 Individualized Diet, the dietary modifications prescribed by a nutrition professional to address the individual's special needs. Finally, the leaves and fruit represent the Level 3 Health-Promoting Diet - an investment in a long and healthy life. When basic nutritional needs for routine growth and survival are satisfied, the individual is free to devote energy to other activities and optimal performance.

Level 1 - Adequate Diet: All persons with I/DD must have access to and be encouraged to eat a nutritionally adequate, culturally appropriate, and pleasing diet. Adequacy is defined by the number of servings and portion sizes of foods indicated in the MyPyramid Food Guidance System (see Resources). Variety within and across food groups is important. The number and size of servings are adjusted for an individual's age, sex, and activity level. Emphasis is on food safety and daily consumption of a variety of whole grains, fruits and vegetables.

Personal assistants have a key role in supporting nutritionally adequate choices by:

Writing, posting, and recording menus that have been developed with as much input from the resident adults with I/DD as possible. Each year, a registered dietitian (RD) or other qualified nutrition professional should review menus to make sure they meet the MyPyramid Food Guidance System, the Dietary Guidelines for Americans, and the Dietary Reference Intake levels for essential vitamins, minerals, and other nutrients. Check with your local hospital, school system food service, or County Public Health Department for a qualified individual to do a free or low-cost menu review.

Offering three meals and healthful snacks at appropriate times each day.

Supporting adults with I/DD to engage in moderately-intense physical activity for a total of 30 minutes per day on most days of the week. Sessions may be broken up into 10-minute segments. Diet and exercise go hand in hand. The United States Surgeon General states that, "Regular physical activity can help people with chronic, disabling conditions improve their stamina and muscle strength and can improve psychological well-being and quality of life by increasing the ability to perform activities of daily life."

"Moderately intense physical activity" means that a person: 1) feels some exertion; 2) breathes harder than when resting; yet 3) can talk comfortably. Moderately-intense activities include brisk walking, dancing, swimming, or bicycling on level terrain; or work such as mowing a lawn, cleaning, hauling, lifting, pushing, carpentry, shoveling, or packing large boxes. For greater benefits, a person could increase the number of active days (every day is best), increase the intensity of the activity (go faster), or increase the total amount of time spent being active each day.

Level 2 - Individualized Diet: Some individuals need a special diet in order to be adequately nourished. They may have difficulty eating or drinking, have food allergies or dislikes, or have secondary conditions such as diabetes, obesity, or drug side effects, all of which alter a person's nutrient or food needs. A Level 2 therapeutic diet prescribed by a physician or registered dietitian may override other Standards of Care recommendations.

For example, physicians or dietitians often prescribe therapeutic diets for individuals with Prader-Willi Syndrome. Most individuals with Prader-Willi Syndrome need support to know when they have eaten enough or when they need to eat more. Without appropriate supports, individuals often overeat and gain an excessive amount of weight. A person with Prader-Willi Syndrome may need high quality, nutrient-dense foods, dietary supplements, and fewer calories in order to balance calories consumed with calories burned.

Individuals with dysphagia, a swallowing disorder, also may have difficulty eating enough of the right foods to stay healthy or maintain an ideal weight. Individuals with dysphagia may also be unable to cough or clear their throats to remove food or liquid that accidentally enters their windpipes. If food or liquid enters the lungs, harmful bacteria may grow and cause aspiration pneumonia. A person with dysphagia needs a special diet of foods and beverages of a manageable consistency, and the support of a multi-disciplinary team of a registered dietitian and speech/or occupational therapist.

A Level 2 diet is part of the person's Personal Supports Plan (PSP) or Individual Plan (IP). A qualified nutrition professional plans and periodically reviews the therapeutic diet menu and provides prior approval for any changes. The nutritionist who plans the therapeutic diet menu should be part of the PSP/IP team discussion of the individual's and staffing resources. It is not appropriate for anyone else to prescribe a diet for an individual or "put" her on a diet, such as a low-carbohydrate or low-fat diet. Individuals on Level 2 diets need to be educated about their needs and included in menu planning.

Level 3 - Health Promoting Diet: All Americans can reasonably expect to live a long and healthy life. To live long and well, individuals with I/DD need diets that reduce their risk for chronic diseases. A health promoting diet improves quality of life and is associated with lower rates of secondary conditions, such as overweight and obesity, physical fitness and conditioning problems, depression, fatigue, and heart disease. The Health Promoting Diet:

Limits simple sugars, salt, saturated fat, trans fat and cholesterol.

Has moderate total fat, mostly from healthful plant oils.

Includes ample whole grains, fruits, vegetables, and a good calcium source (dairy, fortified foods, or supplements).

Limits candy, sodas, desserts, processed meats, and salty snacks (e.g. chips).

Has low-fat protein mostly from plant sources, and limited amounts of animal protein (i.e. meat).

For most individuals, includes a multiple vitamin/mineral supplement recommended by his or her health care provider. Unless prescribed by the health care provider, the supplement should provide only 100% of the Dietary Reference Intake appropriate for the individual.

Includes alcoholic beverages with caution and in moderation (if at all).

Regardless of their living situations, menu planning for adults with I/DD is helpful. A basic menu that has been reviewed for adequacy can serve as a template or model for slightly different, but always nutritionally sound, weekly menus. Menus increase the likelihood that meals will be adequate. They save money because the individual makes fewer shopping trips and only buys items that will be used. Planners can modify weekly or biweekly menus to include sale items or USDA Commodities program foods (see Using Commodities and Canned Foods in Group Homes for Adults with Disabilities).

Nutrition education should be a component of the food systems in the homes of adults with I/DD. Caregivers, personal assistants, healthcare providers, and family members can teach basic knowledge of healthy and less healthy foods, safe food preparation, meal planning, and the association between eating well and good health. The resources listed at the end of this document provide basic education on nutrition principles.

Adults with I/DD and their care providers should regularly consult with and obtain guidance from a qualified nutrition professional. The progression of disability and secondary conditions, age, and lifestyle choices can change an individual's nutrient needs. A qualified nutrition professional can review menus, suggest practical tips on improving diets, and screen for nutrition-related disease and secondary conditions.

Caregivers also need appropriate nutrition and food safety training so they can assist in preparing food safely and can recognize unsafe conditions or practices. The goal is to support the individual's greatest possible independence.

Nutrition Rights for Individuals with Intellectual or Developmental Disabilities

Individuals with intellectual or developmental disabilities (I/DD) have the right to expect:

Nutritional support from providers who respect their needs.

A nutritious and adequate diet based on scientific health and nutrition research.

A culturally-acceptable diet that promotes the individual's health and meets individual needs.

Safely-prepared and stored food served in a pleasant atmosphere.

A varied diet of fresh, whole, and minimally-processed foods.

Choices of foods to include or exclude from an individual's diet.

Ongoing information about individual dietary needs and appropriate foods to meet those needs.

Representation in population-based food and nutrition research studies, to ensure that findings generalize to, and are useful for, people with disabilities.

Fair and respectful treatment from food and nutrition professionals.

These Standards of Care are based on the current scientific research on adults with and without disabilities and will be updated regularly. Please note that individuals with I/DD are under-represented in most research studies. Your feedback is important to the nutrition and health of individuals with intellectual or developmental disabilities. We would like to hear from you!
Resources: General Nutrition Guidelines and Support:
MyPyramid (the Food Guide Pyramid): Nutrition standards for an adequate diet. Includes a web-based tool to customize the Pyramid for each individual: http://www.mypyramid.gov/

Dietary Guidelines for Americans: USDA/HHS suggestions for enjoying food and maintaining good health: http://www.healthierus.gov/dietaryguidelines/

American Dietetic Association: Registered dietitians' professional organization can locate a dietitian in your area: www.eatright.org

U.S. Department of Agriculture: Gateway to reliable nutrition information: www.nutrition.gov

Cooperative State Research, Education, and Extension Service: Food and nutrition agents provide individualized information on menu and meal planning, food budgeting, and other topics. For local offices, call 202-720-7441 or visit: http://www.csrees.usda.gov/Extension/

Links to Montana County Extension Offices

Food and Nutrition Information Center: Information on nutrition, food safety, and U.S. food programs (i.e. food stamps, commodities). Call 301-504-5719 (V) or 301-504-6856 (TTY) or search the index at http://www.nal.usda.gov/fnic/

Food Safety Training and Education Alliance: Professional food service web site has safe food handling staff training materials and resources.
Disability and Health:
Healthy People 2010: National health objectives for Americans with and without disabilities: http://healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=9

Healthy People 2010, Chapter 6: National health objectives on disability and secondary conditions: http://fodsupport.org/documents/HealthyPeople2010DisabilityChapter.pdf

Montana Disability and Health Program: Nutrition resources for individuals with disabilities: http://mtdh.ruralinstitute.umt.edu/Directory/Nutrition.htm

U.S. Health and Human Services: Gateway to reliable health information: www.healthfinder.gov
Physical activity:
Centers for Disease Control and Prevention: General information and materials on becoming physically active: http://www.cdc.gov/nccdphp/dnpa/physical/

National Center for Physical Activity and Disability: Information and guidelines on exercise and activity for individuals with all types of disabilities: http://www.ncpad.org/

Write in your local resources here: Name Telephone

Consulting nutritionist or dietitian: ________________________________

Public Health Department: ________________________________

County Extension Foods/Nutrition Agent: ________________________________

Health care provider: ________________________________
For more information, contact:
Kathleen Humphries, Ph.D.,
khumphries@ruralinstitute.umt.edu
Montana Disability and Health Program
The University of Montana Rural Institute
52 Corbin Hall, Missoula, MT 59812-7056
888-268-2743 toll-free;
406-243-5467 Voice;
406-243-4200 TTY
406-243-2349 (fax)
http://rtc.ruralinstitute.umt.edu
http://mtdh.ruralinstitute.umt.edu

Opinions expressed are those of the authors, and not necessarily those of the funding agencies.
This report is available in Braille, large print and text formats on request.

This Standard of Care was prepared by Kathleen Humphries, Meg Traci, Tom Seekins, and the MTDH Advisory Board. The Montana Dietetics Association Executive Board reviewed content. A version is also available for individuals with intellectual disabilities.

© RTC: Rural, November 2005.

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Nutrition for Individuals with Intellectual

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Nutrition Standards of Care for Use by Personal Assistants, Service Providers, Healthcare Providers, Nutrition Professionals, and Family Members The goal of this Nutrition Standards of Care is to promote quality food and nutrition supports for adults with intellectual and/or developmental disabilities (I/DD).

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rehabilitation research & training center

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Health Promotion Interventions: What's Working for People with Intellectual Disabilities?

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Health Promotion Interventions: What's Working for People with Intellectual Disabilities? Presented by Tamar Heller & Jeff McCubbin

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The American Association on Health and Disability will be collaborating with the National Center on Physical Activity, Health and Disability (NCHPADD) on a five year cooperative agreement funded by the CDC, National Center on Birth Defects and Developmental Disabilities.

Reversing the disproportionately higher rates of obesity among children and adults with disability requires a comprehensive and coordinated approach that uses policy, system and environmental change (PSE) to transform communities into inclusive health communities that support and promote healthy lifestyle choices for people with disability. NCHPAD will use a new knowledge-to-practice framework (N-KATS, NCHPAD Knowledge Adaptation, Translation and Scale up) to achieve three short-term and five intermediate outcomes. The N-KATS framework contains four sequenced phases. Phase I involves the collection of existing evidence-based programs and models in physical activity, nutrition and obesity that are reviewed, catalogued and systematically adapted with a new tool (GRAIDs, Guidelines, Recommendations and Adaptations Including D isability) that separates the core components of a program into five recommendation and adaptation domains (built environment, equipment, services, instructional, policy). 15 GRAID accessibility criteria are used to ensure strong fidelity between and within program adaptations. Phase II focuses on the dissemination of resources, materials, and tools to early adopters and 'shovel-ready' programs through national networks and partnerships. Phase III provides inclusive health promotion training to a select group of service providers with Center staff serving as facilitators. And Phase IV captures successful elements of community health inclusion (i.e., PSEs) through a comprehensive data collection system that efficiently and effectively scales 'best practices' to a growing number of communities nationwide. In the aggregate, these four phases are aimed at accomplishing three short-term (STO) and five intermediate (IO) outcomes: Increased availability and use of community models, tools, and resources (STO1); Increased knowledge and awareness of health risk factors in people with disability (STO2); Improved collaboration with partners (STO3); Improved evidence base for health promotion programs (IO1); Increased adoption of inclusive programmatic, policy, systems, and environmental changes (IO2); Increased participation in evidence-based and innovative health promotion programs (IO3); Improved organizational capacity to serve communities across the U.S. (IO4); and Improved data collection methods to capture successful 'best practices'(IO5). With NCHPAD's new knowledge-to-practice framework (N-KATS), the Center now has the capacity to build and expand upon successful, inclusive 'best practices' that can transform communities into places that support and promote healthy lifestyles for the more than 50 million Americans with disability.

Partner expansion and material and resource dissemination is a key component of the NCHPAD project. AAHD will be involved in the pieces of the cooperative agreement that focus on dissemination, outreach and evaluation. AAHD has been a formal partner with NCHPAD since 2012 and has worked with NCHPAD staff since 2002.

2012-2015

The American Association on Health and Disability (AAHD) is partnering with the National Center on Health, Physical Activity and Disability (NCHPAD) at the University of Alabama to perform a stakeholder analysis and disseminate materials across the AAHD network specific to NCHPAD cooperative agreement (2012-2015) with the Center for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities (NCBDDD). AAHD was selected to work with NCHPAD due to AAHD's excellent track record of working with disability, policy and health organizations within Washington, DC and across the nation. AAHD will work with NCHPAD to support the translation of the project's work at the local, state and national level. AAHD will utilize list serves, social media strategies, newsletters, conferences and meetings and communication channels of partners to educate the public and key stakeholders. The NCHPAD/AAHD partnership will disseminate to stakeholders information about the importance of community inclusion by reaching out to state/territorial public health departments, community partners, policy advocates, disability organizations, health organizations, federal partners, advocacy organizations and consumers. Our goal is to educate targets to ensure that state and national plans contain inclusive policy recommendations necessary to promote access to community health initiatives and programs for people with disabilities. AAHD will be involved in educating targets about the toolkit that will be developed as part of this project, as well as project webinars and materials developed.

AAHD conducted a stakeholder analysis to determine acceptability of the new inclusive guidelines and criteria developed under this project. AAHD worked to review the new community inclusion guidelines and criteria and then developed a survey instrument used to interview stakeholders to include CDC, NCBDDD disability and health state grantees, partners and disability/health organizations. AAHD project staff was involved in the analysis of stakeholder responses.

Please visit the NCPAD website at www.ncpad.org to learn more about this initiative and the outstanding work that is being conducted at the University of Alabama and the Lakeshore Foundation.

Recently released Guidelines on Disability Inclusion on Physical Activity, Nutrition and Obesity: click here. Also click on guidelines on the right of this page.

A study about the Community Health Inclusion Index (CHII), a new evaluation tool for improving inclusion of people with disabilities in community health initiatives, was recently published in the BMC Public Health Journal.

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National Center on Health, Physical Activity and Disability (NCHPAD)

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The American Association on Health and Disability will be collaborating with the National Center on Physical Activity, Health and Disability (NCHPADD) on a five year cooperative agreement funded by the CDC, National Center on Birth Defects and Developmental Disabilities.

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National Center on Health, Physical Activity and Disability (NCHPAD)

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Down Syndrome and Nutrition : NCHPAD - Building Inclusive Communities

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Examine the nutritional needs and recommended guidelines to help address common health concerns related to Down Syndrome.

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24th Annual New York City Buddy Walk®!

Join NDSS for the 24th Annual New York City Buddy Walk® on September, 15, to honor and celebrate individuals with Down syndrome in our communities. This event is focused on raising awareness and funds for programs that benefit people with Down syndrome and their families.
Register today!

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Human Rights Organization for Individuals with Down syndrome | NDSS

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Join NDSS for the 24th Annual New York City Buddy Walk® on September, 15, to honor and celebrate individuals with Down syndrome in our communities. This event is focused on raising awareness and funds for programs that benefit people with Down syndrome and their families. Register today!

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Centers for Disease Control and Prevention

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national center on developmental disabilities and developmental disabilities

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CDC works to identify causes of Developmental Disabilities and opportunities to prevent them. By applying a public health approach incorporating three essential elements-surveillance or disease tracking, research to identify causes, and prevention research and programs-we can rapidly translate scientific findings into appropriate public health interventions.