SENATE BILL REPORT

                                    SB 5820

             AS REPORTED BY COMMITTEE ON HEALTH & LONG-TERM CARE,

                                 MARCH 6, 1991

Brief Description:  Developing a children's long‑term care policy.

SPONSORS:Senators L. Smith, Niemi, Bailey, L. Kreidler and Bauer.

SENATE COMMITTEE ON HEALTH & LONG‑TERM CARE

Majority Report:  That Substitute Senate Bill No. 5820 be substituted therefor, and the substitute bill do pass.

      Signed by Senators West, Chairman; L. Smith, Vice Chairman; Amondson, Johnson, L. Kreidler, Niemi, and Wojahn.  

Staff:  Sarena Seifer (786-7417)

Hearing Dates:March 5, 1991; March 6, 1991

BACKGROUND:

Medical advances have enabled many children to survive severe, life threatening injuries, illnesses and births.  Many of these children subsequently require life support systems and substantial nursing care and monitoring for years.

Medical foster homes are the primary residential care options for these medically fragile children, who need 24 hour a day skilled health care supervision and interventions to avoid death, serious injury or rapid deterioration.  Currently, other residential care options are limited to hospitals and a small number of institutional or group care settings.   

There are currently no facilities in Washington designed to meet the long-term inpatient skilled nursing care needs of medically fragile children.  In addition, families receive limited support for the care of their medically fragile children within their homes.

No specialized minimum standards and guidelines exist for residential care options for medically fragile children.  At least two programs are operating under a temporary "special group home" state licensing category.

SUMMARY:

Duties of the Department of Social and Health Services (DSHS) and the purpose of agencies created for the care of children, expectant mothers, and the developmentally disabled are expanded to include creation of an array of residential and family resource services for medically fragile children.

Medically fragile children are defined as individuals up to the age of 18 who require 24 hour a day skilled health care supervision and interventions to avoid death, serious injury or rapid deterioration.

DSHS must establish a children's long term care policy incorporating a continuum of in-home and residential family resource options.  All decisions regarding the use of resource options must be made according to an individualized family and child centered plan.  The plan must ensure stability and promote family involvement and choice.

Residential care options must include specialized group care facilities, medical group homes in residential neighborhoods and specialized medical foster homes.  These options may provide both short and long term services.

Specialized group care facilities are not limited to a single, free-standing facility.  Agencies may provide a variety of options clustered in a limited area.

DSHS and the Department of Health must establish an interagency agreement to guide the selection of facilities and agencies authorized to establish residential care options.  The Legislative Budget Committee (LBC) must report to the Legislature and provide oversight in the development of this agreement.

LBC is directed to conduct an independent evaluation of residential care options for medically fragile children.

EFFECT OF PROPOSED SUBSTITUTE:

State operated living alternatives operated by the Department of Social and Health Services are included in an array of residential options.

Specific oversight requirements and timelines are included for the development of the children's long-term care policy and interagency agreement.

The LBC evaluation of residential care options for medically fragile children is deleted.

Appropriation:  none

Revenue:  none

Fiscal Note:  requested February 22, 1991

TESTIMONY FOR:

Washington must expand the range of available support options for medically fragile children and their families.  All available support options must preserve family choices and involvement.  The legislation addresses the gaps in current services and decision processes for medically fragile children and their families.  The bill encourages the development of sensible and needed policy to address the needs of medically fragile children and their families.

TESTIMONY AGAINST:  None

TESTIFIED:  PRO:  Russ Fink, Cheri Fink, Rick Mudd, Terry Johnson, parents; Sharon Hansen, DDPC; William Quick, DSHS/DCFS; Linda Johnson, DSHS/DDD; Jeff Larsen, Washington Assembly for Citizens with Disabilities; Gary Moore, Washington Federation of State Employees; Jill Dickinson, parent; Margaret Casey, Washington State Catholic Conference