Medicaid long-term services and supports and caregiving needs of caregivers of individuals with intellectual and developmental disabilities.

Background: Long-term care services are funded primarily by Medicaid long-term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self-reported caregiver needs is not well understood.

Method: Caregivers (n = 405) of individuals with intellectual and developmental disabilities across four states (NY, OH, TX, and PA) completed an online survey.

Caregiver support, burden, and long-term planning among caregivers of individuals with intellectual and developmental disabilities: A cross-sectional study.

Background: Long-term care planning (LTCP) is critical for individuals with intellectual/developmental disabilities. Objectives of this study were to investigate progression through LTCP, and associations between social support and: (1) LTCP and (2) burden among family caregivers.

Methods: A cross-sectional survey was distributed to caregivers of individuals with intellectual/developmental disabilities in NY, OH, PA, and TX, exploring demographics, supports, burden, and LTCP behaviours.

Behavioral and neuropsychiatric challenges across the lifespan in individuals with Rubinstein-Taybi syndrome.

Rubinstein-Taybi syndrome (RSTS) is a rare congenital disorder characterized by developmental and intellectual disability, broadening of thumbs and halluces, and characteristic facial features. Pathogenic variants in lead to RSTS type 1 (RSTS1) and in lead to RSTS type 2 (RSTS2). Individuals with RSTS can demonstrate a variety of behavioral and neuropsychiatric challenges, including anxiety, hyperactivity/inattention, self-injury, repetitive behaviors, and aggression.

Seeking Out Social Learning: Online Self-Education in Parents of Children With Intellectual and Developmental Disabilities.

Supportive, informed parenting is critical to improve outcomes of children who experience intellectual and developmental disabilities (IDD). Parents want to learn about their child's condition, needs, and strategies to improve family life. The internet is a valuable resource, but how parents evaluate and apply information is unknown.

Identifying key components of a web-based long term care planning intervention for family caregivers of individuals with intellectual/developmental disabilities.

Background: Few family caregivers of individuals with intellectual or developmental disabilities develop long-term care (LTC) plans for their relative. Web-based interventions promoting LTC planning have potential for widespread adoption into clinical practice.

Methods: We conducted focus groups with 49 primary caregivers of individuals with intellectual or developmental disabilities in NY, PA, OH, DE, and TX to identify barriers and facilitators of LTC planning, review existing tools, and identify critical features for web-based LTC planning interventions.

Caregivers of individuals with Rubinstein-Taybi syndrome: Perspectives, experiences, and relationships with medical professionals.

Rubinstein-Taybi syndrome (RTS) is a rare genetic disorder. Family-centered care (FCC) is a healthcare delivery approach that aims to create an equal partnership between caregivers and providers. FCC has been shown to improve parental wellbeing, their knowledge of the condition and care, and improve their feelings of self-efficacy and personal control.

Implementing Living Independent From Tobacco With Dyads of People With Disabilities and Their Caregivers: Successes and Lessons Learned.

People with disabilities have more health complications and higher healthcare utilization related to tobacco use than people without disabilities. Yet, they are less likely to use tobacco cessation resources. Important to meaningful and lasting health behavior change are relationships developed in the home, workplace, and community.

Living Independent From Tobacco reduces cigarette smoking and improves general health status among long-term tobacco users with disabilities.

Background: People with disabilities disproportionately use tobacco and suffer associated negative health consequences. Research is needed to explore tobacco cessation programming for people with disabilities to counter these health disparities.

Objective: We evaluated the impact of Living Independent From Tobacco on tobacco use, knowledge and attitudes about tobacco use, coping skills, and perceived health status among people with disabilities.

Enhancing language in children who are deaf/hard-of-hearing using augmentative and alternative communication technology strategies.

Background: Despite early identification and intervention, many children who are deaf/hard of hearing (D/HH) demonstrate significant gaps in language development which can directly impact social interactions.

Aims: The objective of this pilot study was to determine whether integrating augmentative and alternative communication (AAC) core word language strategies into a speech-language therapy program for young children who are D/HH improves spoken language outcomes.

Methods: Eleven young children, median age 5 years 7 months (range 3y;11 m to 10y;8 m) with bilateral hearing loss were enrolled in a single-case experimental design and completed a 24-week intervention that incorporated high-tech AAC strategies into a traditional speech-language therapy model (technology-assisted language intervention or TALI).

Evidence for the Fidelity and Effectiveness of for People with Disabilities and Their Caregivers.

People with disabilities (PWD) are more likely to use tobacco and less likely to access tobacco cessation programs compared with people without disabilities. (LIFT), an evidence-based intervention designed for PWD, was piloted with dyads of PWD (n = 5) and their caregivers (n = 7). As an important source of practical and social support for PWD, caregivers also impact health-related attitudes, knowledge, and behaviors of PWD.

Caregiving for youth with co-occurring developmental disabilities and behavioral health issues when caregivers face additional health-related stressors: Analysis of risk and protective factors from a national sample.

Background: Family caregivers of youth with DD and behavioral health issues experience the highest level of caregiving strain. Many must also deal with their own or another family member's chronic health condition, which may place them at additional risk for poor outcomes.

Aims: (1) Provide a "snapshot" of DD family caregivers based on a national sample; (2) identify risk and protective factors among groups of DD caregivers with graduated levels of health-related stressors; (3) examine the impact of risk and protective factors on strain for DD caregivers.

The Associations of Chronic Condition Type and Individual Characteristics With Transition Readiness.

Objective: Identifying differences in transition readiness according to chronic condition is essential for understanding whether special emphasis within specific populations is warranted. Youth with chronic conditions (type 1 diabetes, Turner syndrome, spina bifida, autism spectrum disorder [ASD]) representing various types of impairments were compared with youth without chronic conditions. It was hypothesized that differences would be observed according to condition type, with youth with cognitive/behavioral conditions showing less readiness than youth with other conditions and youth without chronic conditions showing the highest levels of transition readiness.