Article 2. Long-term Care For Degenerative Genetic Disease of California Health And Safety Code >> Division 106. >> Part 5. >> Chapter 2. >> Article 2.

The Legislature finds and declares that there are many persons in California who are victims of chronic and degenerative genetic conditions, who experience a wide range of degenerating conditions including mental and physical deterioration. For some of these conditions, there is no known prior detection or subsequent treatment. The Legislature further finds and declares that appropriate supportive care services, both in and out of the home, are very often unavailable, due to the lack of resource identification and referral, and the lack of case management services.

The department and the State Department of Social Services shall, after consultation with the Genetically Handicapped Persons Program of the department and consumer organizations representing persons with chronic and degenerative conditions, as defined in Section 125210, compile a list of long-term care resources that serve adults with chronic and degenerative conditions, as defined. The list of resources shall include those that have already been identified by the Genetically Handicapped Persons Program as serving persons with Huntington's disease, Joseph's disease, and Friedrich's ataxia, and shall include those that have already been identified by consumer organizations representing persons with chronic and degenerative conditions. The list of resources shall include, but not be limited to, the following:
  (a) Public and private skilled nursing facilities and intermediate care facilities.
  (b) Public and private community residential care facilities.
  (c) Public and private out-of-home long-term care resources such as day activity programs, and in-home support service programs. Nothing in this section shall require the State Department of Health Care Services to undertake a survey of long-term care facilities or programs in the state for the purposes of carrying out the requirements of this section. The information shall be made available to the public, upon request, through the Genetically Handicapped Persons Program of the department.

For the purposes of this article, chronic and degenerative diseases shall include those conditions that are neurological and neuromuscular in origin, including such disorders as Huntington's disease, Friedrich's ataxia, Joseph's disease, and other disorders that are determined by the department to be similar in origin and clinical manifestation to the named disorders, and that affect adults.

The department and the State Department of Social Services shall review regulations that currently provide disincentives to providers of in-home and out-of-home long-term care resources, as defined in Section 125205, to accept and serve persons with chronic and degenerative disorders. The review shall be conducted with assistance and input from the Genetically Handicapped Persons Program of the department. These departments shall provide a list of those regulations to the Legislature by September 1, 1982. The regulations subject to review shall be those regulations that do the following:
  (a) Affect the admission of patients to state-licensed skilled nursing facilities, intermediate care facilities, and community residential care facilities.
  (b) Affect the staffing ratios necessary to care for persons with chronic and degenerative conditions, as defined, within those facilities.
  (c) Affect the likelihood of facilities, or of day care programs and in-home support service programs, to refuse the admission of persons with chronic and degenerative conditions, solely on the basis of anticipated jeopardy to their licensing, or on the basis of anticipated liability to the facilities arising from instances where a person's degenerative condition, by its own clinical merits, results in medical complications that are, in fact, entirely unrelated to the quality of care provided by the facility or program.

The actions undertaken pursuant to this article shall not impose additional state obligations or expenditures for the care of persons with chronic and degenerative conditions, as defined by this article, unless the Legislature enacts a statute specifically appropriating money for the additional obligations or expenditures.