Be it enacted by the Senate and House of Representatives in General Court assembled, and by the authority of the same as follows:
SECTION 1. There shall be a special commission to investigate long-term care options for neurologically or physically disabled adults who maintain emotional, psychological and intellectual capacities and who are underserved or unrepresented by a specific state agency. The target population for the investigation is adults between 19 and 59 years of age with adult onset chronic disabilities including, but not limited to, multiple sclerosis, amyotrophic lateral sclerosis, known as Lou Gehrig’s disease, spinal cord injuries, muscular dystrophy, arthritis, Parkinson’s disease and diabetes.
SECTION 2. The investigation shall include, but not be limited to, the availability, nature and adequacy of the following services for the target population: residential nursing care communities, residential or day facilities and programs or respite care services, community-based housing and support models, and personal care attendant services. Specific information shall be included about programs that provide social opportunities for the target population.
SECTION 3. The commission shall investigate the current status and appropriateness of the residential placement of current residence of the target population in nursing facilities if safe, alternative, beneficial care can be provided in a community setting. The commission shall investigate the geographic concentrations of the target population in order to determine their long-term care needs. The commission shall investigate what specialized services, staff trainings, and expertise are needed to serve the psychosocial, familial, and medical needs of the target population and the appropriate number and location of beds for a specialized residential or respite program.
SECTION 4. The commission shall investigate the demand for 24-hour residential care and treatment for the target population, the capacity of existing facilities to meet that demand, and the means, practicability, social desirability and demand for regional facilities modeled after The Boston Home, Inc. that are newly constructed or converted from existing nursing care facilities.
SECTION 5. The commission shall collect and review data from the Massachusetts office on disability, the office on health and disability of the department of public health, the Massachusetts rehabilitation commission, the division of medical assistance, and any other state or quasi-state agencies or departments with relevant information about waiting lists, the size of the target population, the population frequency by type of disability and location, the profile of disabled adults in and location of each facility currently offering specialized services, and plans for expansion or closure of facilities offering specialized services. The commission shall also examine non-confidential data from private local agencies and nonprofit organizations serving the target population to determine the met, unmet and statistically anticipated needs of the target population.
SECTION 6. The commission shall assess the fiscal impact, if any, of meeting the residential, psychosocial and physical dependency needs of the target population, including but not limited to a review of: the current status and accounting of available beds or units within existing facilities, the existence of public or private facilities or homes serving this population, determination of whether and how hospital units should be restructured or retrofitted to accommodate the target population, review of the appropriateness of the services offered in the units dedicated to serving the target population, examination of the state and federal regulations governing long-term care facilities, including respite beds for the target population, and evaluation of options for affordability.
SECTION 7. The commission shall consist of the chairs of the joint committee on health care financing or their designees, who shall serve as co-chairs; 1 member of the house of representatives appointed by the minority leader; 1 member of the senate appointed by the minority leader; the secretary of health and human services or his designee; the assistant secretary for the office of disabilities and community services or his designee; the commissioner of public health or his designee from the office on health and disability; the commissioner of medical assistance or his designee; the commissioner of the Massachusetts rehabilitation commission or his designee; the director of the Massachusetts office on disability or his designee; and 4 persons appointed by the governor, 1 of whom shall be a professional from The Boston Home, Inc., 1 of whom shall be a representative from the National Multiple Sclerosis Society, 1 of whom shall be a professional from an organization that serves a segment of the target population and 1 person of the target population.
SECTION 8. The commission may hold public hearings to assist in the collection and evaluation of data and testimony from family members, caregivers, directors of facilities, and other state offices, as well as other sources of information.
SECTION 9. The commission shall file a report of the results of its investigation with the clerks of the house of representatives and senate, the house and senate committees on ways and means and the joint committee on health care financing on or before December 31, 2007. The report shall include recommendations for long-term care options starting from the time of adult onset of disabilities for the target population through and including provision of services by residential nursing care communities for the target population, the cost of maintaining or establishing those facilities, and for legislation necessary to implement or allow for the maintenance, retrofitting, renovation, or construction of facilities for the target population.
The report shall also include recommendations and any legislation necessary to address the respite care needs for the target population who continue to be cared for by family members or friends in the community.
Approved September 26, 2006.