SB2051 SD1

SECTION 1. The legislature finds that adults with intellectual or developmental disabilities experience disproportionate health disparities compared to those without disabilities. Individuals with intellectual or developmental disabilities are more likely than their peers without disabilities to have fair or poor health, be considered obese, and be diagnosed with chronic diseases, such as diabetes. Intellectual and developmental disabilities are life-long differences that typically arise before adulthood and can uniquely influence the trajectory of an individual's life, including their physical, intellectual, behavioral, and emotional development. The state council on developmental disabilities was created to advocate for and improve and protect the lives of individuals with intellectual or developmental disabilities in the State.

Decades of research clearly establishes that people of minority groups living in the United States receive poor health care and have poor health outcomes resulting from social determinants of health. On a national level, racial and ethnic disparities in access to health care and health outcomes are a persistent, pervasive public health problem. In the State, underserved populations, such as Native Hawaiian and Pacific Islanders, have been historically underrepresented in health care, as data does not accurately reflect the health disparities currently faced by this group. Additionally, individuals from the neighbor islands are also underrepresented and underserved, as access to health care resources and services are limited. However, even less is known about the extent of racial and ethnic health disparities among adults with intellectual or developmental disabilities. Accordingly, there is an urgent need to create an updated, accurate set of data that reflects the State's unique needs to assist certain agencies to better understand the needs of individuals with intellectual or developmental disabilities in their communities.

The legislature further finds troubling gaps in the health disparities of people with intellectual or developmental disabilities and their social determinants of health in the State. Certain recent health surveys in the State and existing related initiatives do not segregate data pertaining to individuals with intellectual or developmental disabilities, nor is the data publicly available. Presently, the State relies on prevalence rate data from the federal government published in 1994-1995 that does not reflect the State's population and its specific needs. Hawaii's prevalence rate is 1.58 per cent, which equals approximately twenty-two thousand people who have an intellectual or developmental disability. Additionally, the only substantial data the state council on developmental disabilities collects on intellectual or developmental disabilities is through the medicaid waiver program, which serves approximately three thousand people. As there is a gap of approximately nineteen thousand people who may have an intellectual or developmental disability in the State, there is little information on quality of life, health care access, and health care outcomes for unaccounted individuals with intellectual or developmental disabilities.

Accordingly, further research is needed to understand the health disparities of people with intellectual or developmental disabilities and their social determinants of health. It is therefore imperative for the State to establish fundamental baseline data for service evaluation, policy development, and research to serve the current and future needs of individuals with intellectual or developmental disabilities. Accurate, current data will also help Hawaii provide culturally appropriate health care, address barriers to health care access, reduce health disparities, increase employment opportunities, and support individuals with developmental or intellectual disabilities to live healthy lives in the community.

Therefore, the purpose of this Act is to appropriate funds and require the state council on developmental disabilities to study the health disparities experienced by individuals with intellectual or developmental disabilities in the State to yield the needed results to help guide the future of public health policy and practice.

SECTION 2. (a) The state council on developmental disabilities shall collect comprehensive data to identify gaps in social determinants of health, especially in the areas of health care access and quality and economic stability, that affect health outcomes and health disparities experienced by individuals with intellectual or developmental disabilities in the State that can be addressed with policy, legislative, or stakeholder action, and shall submit a report to the legislature no later than twenty days prior to the convening of the regular session of 2026. The report shall include:

(1) A definition of the State's intellectual or developmental disability population for public health administration purposes, including the health conditions, duration, and level of severity required to qualify for disability status;

(2) A definition of the social determinants of health as used by the United States Department of Health and Human Services;

(3) Population-level differences in the State between individuals with and without intellectual or developmental disabilities on health indicators and social determinants of health, including:

(A) Access to necessary health care;

(B) Access to preventive health care, including wellness programs and emotional support services;

(D) Health status and outcomes, including the percentage of individuals who are considered obese or diagnosed with chronic diseases, including diabetes, hypertension, and cardiovascular diseases;

(E) Drivers of health outcomes, including the impetus to seek health care and how individuals seek health care;

(F) Emergency preparedness, including evacuation planning and ability;

(G) Health insurance coverage;

(H) Social determinants of health and health outcomes, including household income, employment status, education level, access to health information technology tools and systems, access to transportation, and the social and community environment; and

(I) Other indicators and determinants that contribute to an individual's physical and mental health;

(4) Factors contributing to the population-level differences, including race, ethnicity, gender, age, county of residence, and economic and social disadvantages and discrimination;

(5) A determination of the population-level differences and contributing factors that are preventable or avoidable;

(6) Any other information that would assist the State in determining safe, equitable, and culturally appropriate public health actions that would improve health care and address the health disparities experienced by individuals in the State with developmental or intellectual disabilities; and

(7) Proposed legislation, including best practices, for the State to reduce the health disparities experienced by individuals in the State with developmental or intellectual disabilities.

(b) In preparing the report, the state council on developmental disabilities may consult with community stakeholders on the following:

(1) Improvements to provider training about intellectual or developmental disabilities;

(2) Life experiences of individuals with intellectual or developmental disabilities;

(3) Accessibility mandates for health infrastructure that include the needs of individuals with intellectual or developmental disabilities;

(4) Communication guidelines and standards for health care providers to communicate with individuals with intellectual or developmental disabilities; and

(5) Other topics as deemed relevant by the state council on developmental disabilities.

"Health disparities" means population-level differences in health outcomes that are related to a history of social, economic, or environmental disadvantages that are avoidable and not primarily caused by underlying health conditions that led to the disability.

"Intellectual or developmental disabilities" means a lifelong difference that typically arises before adulthood that uniquely influences the trajectory of the individual's physical, intellectual, behavioral, and emotional development and impacts how individuals experience the world around them.

SECTION 3. In accordance with section 9 of article VII of the Hawaii State Constitution and sections 37-91 and 37-93, Hawaii Revised Statutes, the legislature has determined that the appropriations contained in Act 164, Regular Session of 2023, and this Act will cause the state general fund expenditure ceiling for fiscal year 2024-2025 to be exceeded by $ or per cent. This current declaration takes into account general fund appropriations authorized for fiscal year 2024-2025 in Act 164, Regular Session of 2023, and this Act only. The reasons for exceeding the general fund expenditure ceiling are that:

(1) The appropriation made in this Act is necessary to serve the public interest; and

(2) The appropriation made in this Act meets the needs addressed by this Act.

SECTION 4. There is appropriated out of the general revenues of the State of Hawaii the sum of $ or so much thereof as may be necessary for fiscal year 2024-2025 for the state council on developmental disabilities to collect comprehensive data and compile and submit to the legislature a report focused on the health disparities experienced by individuals with developmental or intellectual disabilities in the State prior to the convening of the regular session of 2026.

The sum appropriated shall be expended by the department of health for the purposes of this Act.

SECTION 5. This Act shall take effect on July 1, 2024.

THE SENATE	S.B. NO.	2051
THIRTY-SECOND LEGISLATURE, 2024		S.D. 1
STATE OF HAWAII