Speaking out for People with
 Intellectual and Developmental Disabilities

Model State Legislation in Support of Residential Choice

Most states opt, as part of their Medicaid plan, to provide services to some people with intellectual and developmental disabilities (ID/DD) the option to receive services in Medicaid funded and certified Intermediate Care Facility for Persons with Mental Retardation (ICFs/MR). ICF/MR residents are the neediest, most fragile, and most disabled citizens of in your state. ICFs/MR provide cost effective, comfortable and safe living for them. A vast majority of the families and guardians of ICF/MR residents are very satisfied with the care their loved ones receive.

Yet, the very existence of ICFs/MR is threatened in many states. Often, the decision to downsize or close an ICF/MR is made unilaterally by a State’s Governor or his/her designee (hereafter, “State’s Administration”), without any involvement of the state’s legislature.

The decision to downsize or close an ICFs/MR should not be made unilaterally by a State’s Administration. When an ICF/MR is closed, a state’s most fragile citizens are removed from their long-time home and often separated from life-sustaining specialized services. Furthermore, nearly every state has thousands of people waiting for services. The decision to eliminate any service option must not rest in the hands of one governmental entity.

Some states have addressed this concern with legislation. 

The following outlines a model legislative proposal that takes the best of several state laws where the legislature has regained control and is in charge of any closure decision that may be proposed. This model also includes ample opportunity for the legislature to hear from all stakeholders and consider all potential ramifications of a proposed closure.

Summary of the Model State Legislation

This proposed bill is modeled after Kentucky Revised Statutes --

The proposed bill contains the following components:

(1) Gives the legislature ultimate discretion regarding the closure of ICFs/MR;

(2) Requires that the Administration give 60 days notice to the legislature and immediate family members/guardians of any intent to propose downsizing or closure; and

(3) Requires a public hearing to give all stakeholders an opportunity to be heard as well as to provide an opportunity for consideration of all aspects of the closure including but not limited to: resident health and welfare, community capacity (residential and healthcare), oversight, and the ultimate projected cost of closure (including the cost of serving the residents in the community).

Similar laws have also been passed in South Carolina (SC Code, 44-20-365, “Closing regional centers to be authorized by law.
No regional center of the department may be closed except as authorized by the General Assembly by law in an enactment that specifies by name the regional center to be closed”); and Oklahoma (OK Statutes, 56-3050, “The Department of Human Services shall not close state-administered resources centers . . . until authorized by the Legislature . . .”). In addition, SB 402 was introduced in Florida (see, SB 402 (2006), http://www.flsenate.gov/data/session/2007/Senate/bills/billtext/pdf/s0402.pdf).  
Detailed Provisions of the Model Legislation

LEGISLATIVE CONTROL

Subject to certain notice of intent requirements, and only after the passage of a state law by the legislature, may a state Administration close any state-owned and operated ICFs/MR.

In the case of a demonstrated health and/or safety emergency that necessitates the gradual or immediate closure of an ICF/MR, the State Administration may seek relief from the requirements of this section in the Circuit Court of the county where the facility is located.

NOTICE
 
The State Administration shall --

(a) At least sixty (60) days prior to the next legislative session, provide written notice to the Legislature of its intent to propose legislation or in any manner permit or encourage immediate or gradual closure of any state-owned and operated ICFs/MR, except in the case where there is a demonstrated health or safety emergency in which ten (10) days notice of intent to file an emergency petition in Circuit Court is required;   and

(b) At least sixty (60) days prior to the next legislative session, provide written notice by registered mail to each resident, his or her immediate family, if known, and his or her guardian, of its intent to propose legislation to permit immediate or gradual closure of any state-owned and operated ICFs/MR, except in the case where there is a demonstrated health or safety emergency in which ten (10) days notice of intent to file an emergency petition in Circuit Court is required; and

(c) Include in the written notice that the resident, the resident’s immediate family, his or her guardian, or any other interested party with standing to act on behalf of the resident has the right to pursue legal action relating to the notice provision of this paragraph and relating to the closure of the facility.

The State Administration shall be subject to the notice of provisions of this Act within ten (10) days of passage of this proposed legislation (and/or the effective date within), for any ICF/MR that the State Administration has announced plans for closure prior to passage of this legislation.  

PUBLIC HEARING
 
If the State Administration proposes the immediate or gradual closure of any state-owned and operated ICF/MR, the State Administration shall –

(1) Hold a public hearing and provide all stakeholders, including residents and their immediate family members and guardians, and each member of the legislature, notice of the hearing by registered mail. 

(2) The hearing shall be held at least 30 days prior to the beginning of the legislative session. Notice shall be provided 60 days in advance of the hearing.

To ensure the health and welfare of the affected residents, the hearing shall at minimum include testimony on the following –

(1)  Community capacity, including adequate staffing, health care, and experienced community providers.
(2)  Total cost of downsizing and closure.
(3)  Effect of the downsizing on DSI residents.
(4)  Individual and community monitoring and safeguards to protect health and safety.
(5)  The process used to develop a community living plan.
(6)  Assurances of family/guardian involvement in the development of the plan.
(7)  Responsibilities of state and local governments.
(8)  The process used to transfer ownership or the state’s plan to reuse the property.
(9)  Plan for reemployment of state workers.
(10)  Other issues identified by the legislature, the resident, family member or guardian, or other interested parties.

For more information, please contact: Tamie Hopp, VOR Director of Government Relations and Advocacy, 605-399-1624, This email address is being protected from spambots. You need JavaScript enabled to view it..