Position of the American Dietetic Association: Providing Nutrition Services for People with Developmental Disabilities and Special Health Care Needs

It is the position of the American Dietetic Association that nutrition services provided by registered dietitians (RDs) and dietetic technicians, registered (DTRs), are essential components of comprehensive care for all people with developmental disabilities and special health care needs. Nutrition services should be provided throughout life in a manner that is interdisciplinary, family-centered, community-based, and culturally competent. People with developmental disabilities and special health care needs frequently have nutrition concerns, including growth alterations (failure to thrive, obesity, or growth retardation), metabolic disorders, poor feeding skills, medication-nutrient interactions, and sometimes partial or total dependence on enteral or parenteral nutrition. Individuals with special needs are also more likely to develop comorbid conditions such as obesity or endocrine disorders that require nutrition interventions. Poor health habits, limited access to services, and long-term use of multiple medications are considered health risk factors. Health maintenance and avoidance of complications can be promoted by timely and cost-effective nutrition interventions. Public policy for individuals with special needs has evolved over time, resulting in a transition from institutional facilities and programs to community living. The expansion of public access to technology and health information on the Internet challenges RDs and DTRs to provide accurate scientific information for those with developmental disabilities and special health care needs. Nationally credentialed RDs and DTRs are best prepared to provide appropriate nutrition information for wellness and quality of life.     

Project Threshold

Project Threshold is a program which uses an interdisciplinary approach to assist persons with physical disabilities in solving their functional problems at home or at work. The program originated to provide rehabilitation engineering services to those persons in the community whose needs were not being met through more traditional services. As the program evolved, it was evident that an interdisciplinary team was needed to fully develop the potential of this service delivery program. Occupational therapists were identified as important members of this team because of their expertise in functional assessment, analysis of activity and teaching such activities. Pivotal to the project's success is the adherence to a thorough and sequential service delivery process. This process is illustrated by the presentation of two cases; one involving an independent living evaluation, and the other a worksite assessment.     

A Night Without Stars (Book)

Children with disabilities need adequate nutritional intake to survive and thrive. Many are at risk and in need of nutritional intervention. In this study we evaluated the outcomes of nutrition services for children with disabilities and their families using an integrated model of feeding and nutrition. Thirty-five children and families who received nutrition intervention services participated in the study. Children with disabilities and inadequate nutrition significantly benefited from nutrition interven- tion services. Children increased in weight-for-height ratios. Families reported in- creased alertness for their children with improved nutritional status. Families of children with greater feeding difficulties experienced increased stress and decreased social support. These findings can help families and professionals work in partnership to meet the nutrition needs of children with disabilities and chronic health care problems before a child becomes severely malnourished or a family becomes dys- functional.     

Helping Families Meet the Nutritional Needs of Children With Disabilities: An Integrated Model

Children with disabilities need adequate nutritional intake to survive and thrive. Many are at risk and in need of nutritional intervention. In this study we evaluated the outcomes of nutrition services for children with disabilities and their families using an integrated model of feeding and nutrition. Thirty-five children and families who received nutrition intervention services participated in the study. Children with disabilities and inadequate nutrition significantly benefited from nutrition interven- tion services. Children increased in weight-for-height ratios. Families reported in- creased alertness for their children with improved nutritional status. Families of children with greater feeding difficulties experienced increased stress and decreased social support. These findings can help families and professionals work in partnership to meet the nutrition needs of children with disabilities and chronic health care problems before a child becomes severely malnourished or a family becomes dys- functional.     

Nutrition Screening for Children With Special Health Care Needs

Children with special health care needs represent a population at increased risk for poor nutritional status and inadequate nutritional support. Although proper nutrition is critical for the growth and development of all children, these children require careful monitoring and early identification of nutrition problems that may result from physical or developmental disabilities, drug-nutrient interactions, or chronic medical conditions. This study was an evaluation of a statewide nutrition screening and referral effort designed to identify the nutrition needs of young children with disabilities. Analysis of 465 screening forms revealed the most frequently identified feeding concern as intake of less than 16 oz or more than 32 oz of milk or formula. The majority of anthropometric data indicated slowed or impaired growth; however, 17% of the screenings indicated no anthropometric data. Even though 734 feeding concerns were identified, 91 % of the completed screening forms either did not make a referral to a nutritionist or had the section blank. Contingency tables and logistic regression were used to examine the variables on the screening form. Interviews and focus groups, with professionals involved in the screening and referral process, identified several issues for children birth to 3 years of age with special health care needs, including lack of a uniform statewide system of nutrition screening and a lack of referral to appropriate community-based nutrition services for intervention. Results indicated a coordinated follow-up system is necessary to ensure that children identified at nutritional risk will receive nutrition intervention services.     

An Interdisciplinary Health Team Training Program for School Staff in Minnesota

ABSTRACT: This paper describes an interdisciplinary health team training program for school-based clinic staff in Minnesota. The project sought to improve team functioning, level of practice, and health care services at the school sites. Participants were interdisciplinary staff members from clinics in senior high, middle, and elementary schools. The program consisted of further development in team training knowledge and skills and educational sessions on issues identified by participants. Evaluations indicated participants reported greater knowledge and improved team functioning experiences from the team training. Gains also were shown in knowledge and skills in specific school topic areas such as violence, resiliency, working with resistant families, and self-care. The program could serve as a model for other interdisciplinary school health team training.     

Crossing the quality chasm: building a safe nutrition system

Recent reports to Congress and the public from the Institute of Medicine underscore concern about the quality of healthcare in America. The nutrition community has focused most of its attention on the report titled The Role of Nutrition in Maintaining Health in the Nation's Elderly, which evaluated nutrition services coverage for the Medicare population. Of equal importance was the recent publication of two reports from the Committee on Quality of Health Care in America: To Err is Human--Building a Safer Health System and Crossing the Quality Chasm--A New Health System for the 21st Century. IV nutrition support was a breakthrough in medical care that has become a standard tool in treating patients who cannot eat for prolonged periods of time. It is also a medical treatment that can result in harm to patients. As problems with patient safety associated with the use of IV nutrition were documented, safer methods to deliver this life-saving form of treatment were developed and evaluated. Although an interdisciplinary team approach has been shown to be the safest way to administer IV nutrition, this system is costly and not universally used. Alternatives to the interdisciplinary team approach should be evaluated to assure that patients receive optimum nutrition care. The tools that can be used to improve patient safety include self-assessment of practitioners who routinely use nutrition support in their practice, curricular-based continuing education programs, board certification in nutrition support practice, and the use of clinical guidelines to assist in making clinical decisions. By developing and promoting these tools, A.S.P.E.N. is committed to building a safe nutrition system so every patient receives optimal nutrition care.     

Community clinic offers access to care. A system and a city collaborate to care for an immigrant population

The Southwest Community Health Clinic (SCHC) has been providing free preventive healthcare to the poor residents of its Houston neighborhood since June 1991. Sponsored by the Sisters of Charity of the Incarnate Word Health Care System and the city of Houston, the clinic invites healing through hospitality, unlike many free clinics. The family-focused clinic takes a multidisciplinary team approach to preventive healthcare. The staff of approximately 30 healthcare professionals provides prenatal and pediatric care; immunizations; tuberculosis screenings; and a variety of social services for patients' physical, emotional, and spiritual needs. SCHC's well-child program screens children from birth through age five for physical and developmental problems. Clinic staff teach and guide parents on their children's health. The program stresses early identification of developmental delays and disabilities, with referral to appropriate services. SCHC has also implemented a tuberculosis testing program to prevent spread of the disease. Persons who test positive are referred to the City of Houston Department of Health and Human Service's chest clinics for follow-up and treatment. Community outreach is a major ingredient of SCHC's preventive healthcare program. A community health advocate, who is familiar with the cultures, traditions, and languages of the population being served, identifies families needing care and supports their access and use of healthcare services.     

Position of The Canadian Dietetic Association and The American Dietetic Association: nutrition intervention in the care of persons with human immunodeficiency virus infection

The goals of nutrition intervention in HIV disease include early assessment and treatment of nutrient deficiencies, the maintenance and restoration of lean body mass, and support for activities of daily living and quality of life. The maintenance and restoration of nutritional stores is closely interrelated and interdependent with each of the other recommended medical therapies. Therefore, it is vital to the health of persons with HIV/AIDS to have access to the services of a registered dietitian, who is the essential member of the health care team for providing nutrition care (48). The registered dietitian should take an active role in developing nutrition care protocols for HIV/AIDS in their practice setting. The dietetic professional must take responsibility for obtaining and maintaining current knowledge in this area and take the lead in translating current nutrition knowledge and research into practical and realistic nutrition guidelines for the individual with HIV/AIDS. Further research is needed in the area of HIV/AIDS and nutrition. Registered dietitians and other members of the health care team are encouraged to conduct nutrition research in the area of nutrition interventions and outcomes of nutrition therapy. Additionally, government health related agencies, national AIDS-related organizations, and private industry should be encouraged to provide funding sources and support to the issue of research in nutrition related problems and interventions in HIV/AIDS.     

Feasibility,benefits and challenges of using telemonitoring for the aging with Developmental Disabilities (DD): An exploratory study

Telemonitoring is being increasingly used to provide services to patients with developmental disabilities in residential community settings. The objective of this study is to assess the feasibility, benefits and challenges of using telemonitoring for aging patients with developmental disabilities. We also assess the benefits and challenges of telemonitoring for the caregivers of these patients. Focus groups and questionnaire-based surveys were used to collect data from patients and caregivers. The study found that telemonitoring was feasible and beneficial for the aging with developmental disabilities, albeit for those who are moderate to high functioning. It was not beneficial or feasible for those with very low functional capabilities. The study found that telemonitoring was beneficial towards providing more independence, more self-confidence in carrying out daily activities, and more knowledge regarding their disease. The study also found that telemonitoring was useful for caregivers to better understand their patients and their needs, better coordinate the services delivered, and to enhance the satisfaction of caregiving. The discussions include limitations of using quantitative methods in this type of setting.     

Transitioning the child fed by gastrostomy into school

Young children dependent on gastrostomy feeding are examples of special-needs children now eligible for expanded nutrition services in schools through Public Law 99-457. With the implementation of this law, nutritionists have an opportunity to expand their roles as consultants to special education teachers. A team approach involving nutrition, nursing, and special education was used to prepare a gastrostomy-fed preschool child and his family for school. The family of the multihandicapped child had been isolated by the child's feeding problems and viewed the problems as barriers to his entering school. Components of a nutrition care plan for an interdisciplinary team included oral feeding readiness, nutritional adequacy and timing of meals, and mechanical aspects of gastrostomy feeding in the classroom. Nutrition interventions were adjusted for the classroom from those used in the home or clinical setting. The major activity in the transition program was behavioral management of the child's rumination, which affected nutritional status and feeding. The major outcome of the transition program was enrollment of the child in school, with gastrostomy feeding as a routine activity. A transition program for a gastrostomy-fed child is an appropriate mechanism for expanding the role of the nutritionist into the classroom.     

Long-term care for people with developmental disabilities: a critical analysis

This article explores how the trends toward long-term community care affecting people with developmental disabilities developed. Appropriateness of care and quality of life issues are discussed. The article also reviews the development of long-term care for frail and disabled elderly people and explores the arguments for a continuum of care that have developed in this area. The authors conclude that future policies with respect to meeting long-term care needs for people with developmental disabilities must be addressed flexibly on an individual basis, related to individual needs, and must provide a continuum of care services.     

Counseling Young People with Physical Disabilities Regarding Relationships and Sexuality Issues: Utilization of a Novel Service

People with disabilities are entitled to the same sexual and reproductive health services as are people without disabilities. However, physical boundaries often limit their ability to utilize these services. The present study describes a novel sexual and reproductive health service designated to address the sexual and reproductive needs of adolescents and young adults with physical or sensory disabilities. The service provides multi professional consultations from the medical and psychosocial disciplines which are accessible to physical and sensory impairments. We describe in this paper the utilization of the service by young people with physical or sensory disabilities between 2006 and 2009. Records of 1,203 patients contacting the service were reviewed for demographic data, type and onset of disability and service utilization. Of the 301 (25%) who were invited for treatment, only 74 patients (6.1%) actually arrived to the service. The reasons for drop-out were difficulties in transportation to the clinic and finding escort to aid in accessibility to public transportation (bus or train). Despite being interdisciplinary and fully accessible, the utilization of the service was highly limited. These findings emphasize the need to consider accessible transportation as an integral part of sexual and reproductive health service delivery for consumers with physical or sensory disabilities.     

Report of the state of the science in aging with developmental disabilities: charting lifespan trajectories and supportive environments for healthy community living symposium

BackgroundThis paper is an introduction to four papers that present the findings of the 2007 “State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Community Living” symposium. The overall goal of this symposium was to increase our understanding and improve the health, psychosocial well-being, and community participation of adults with intellectual and developmental disabilities over their life course.MethodsThe symposium consisted of four main tracks: (1) neurodevelopmental conditions; (2) health care services, health promotion needs, and health literacy; (3) family support and intergenerational caregiving; and (4) environmental barriers and supports to community living.Results/ConclusionsRecommendations offer a research agenda that would increase our knowledge on the life span trajectory for individuals with intellectual and developmental disabilities and on methods for developing and assessing effectiveness of practices and policies on individuals with intellectual and developmental disabilities, their families, and their other service providers.     

Interdisciplinary case management: a model for intervention

Interdisciplinary case management is required when clients present problems that do not fall within the purview of any one discipline. The interdisciplinary approach entails the participation of professional and support staff, along with the client and his/her family, in diagnosis, individual program planning, implementation, and evaluation. For example, interdisciplinary case management for a patient with Prader-Willi syndrome (PWS) results in cost-effective, efficacious treatment. Because of the diversity of symptoms, the treatment of Prader-Willi syndrome must incorporate knowledge and skills from a variety of areas. A model for the interdisciplinary case management of PWS is presented. The model is problem focused and emphasizes goals formulated and acted upon by the disciplines represented on the client's treatment team. Communication and coordination of efforts are central to the utility of the model. Additional benefits of interdisciplinary case management include the opportunity for ongoing education and role expansion of team members.     

Multiple delivery methods for an interdisciplinary audience: assessing effectiveness

Recent federal legislation has provided guidelines for intervention services for infants and toddlers with handicaps, birth to age three, and their families. Many disciplines, including nursing, will be involved in providing these services. Serving on an interdisciplinary team or acting as a consultant requires appropriate preparation. Many professionals are not comfortable with their roles in serving this new population, due in part to the limited emphasis on the handicapped infant and toddler in most basic preservice professional education programs. The project described here was useful in helping an interdisciplinary audience develop knowledge and skills needed for intervention services for infants and toddlers.     

Guide to Getting Reproductive Health Care Services for Women with Disabilities Under the Americans with Disabilities Act of 1990

For women with disabilities, obtaining reproductive health care services from physicians is not always easily accomplished. There are non-physical barriers such as: 1) physicians' attitudes that dehumanize women with disabilities, and treat them as asexual: 2) women with disabilities' lack of knowledge about sexuality and reproduction; and 3) physicians' unfamiliarity in treating women with disabilities. There are physical and architectural barriers as well, such as: 1) physicians' offices that are inaccessible; and 2) patients' difficulties in communicating with their physicians if they have a visual or hearing impairment. The Americans with Disabilities Act (ADA) was passed by Congress in 1990, and this statute generally and specifically prohibits physicians, both in their private offices and in state and locally-funded health care clinics, from engaging in certain actions that may prevent women with disabilities from obtaining reproductive health care services. Physicians cannot deny services, cannot give unequal treatment, and cannot give separate treatment to women with disabilities who are covered under the Act. The ADA encourages physicians to integrate patients with disabilities with patients without disabilities. Specifically, the ADA prohibits: 1) eligibility criteria that screen out patients with disabilities; 2) not modifying policies, practices, and procedures to accommodate the needs of women with disabilities; 3) not using auxiliary aids and services or an alternative means of communication with patients with disabilities, unless it is an undue burden; and 4) not removing architectural and communication barriers that are structural in nature, if readily achievable. For violations of the ADA, complaint procedures are listed in this article, as well as sources of information from which women with disabilities and others can obtain more knowledge about the ADA.     

Challenges of preparing allied health professionals for interdisciplinary practice in rural areas

Meeting the health needs of individuals in rural communities involves addressing the challenges of complex multifaceted health problems, limited local health resources and services, isolation, and distance. Interdisciplinary collaboration can create solutions to health care problems that transcend conventional, discipline-specific methods, procedures, and techniques. This paper reports on the four-pronged approach of the Western Maryland Area Health Education Center used to prepare allied health students to be interdisciplinary team members in rural areas. It describes the development of four interdisciplinary instructional team member training venues (in-class instruction, Web-based modules, service-learning programs, and faculty development workshops) that integrate opportunities to develop and practice interdisciplinary health promotion skills in rural communities. Challenges to implementing the model are described, including developing faculty and student training participation, integrating training venues into existing programs at participating institutions, and designing a unified program evaluation.