The Lawsuit

POSITION STATEMENT

The following is a Position Statement developed by The Arc of Colorado and disseminated on March 15, 2002.

Prelude:

The Arc of Colorado supports the waiting list lawsuit against the State of Colorado. The Arc of Colorado is an organization that advocates for and supports individuals with developmental disabilities and their families, and promotes services and programs that will bring these individuals a better quality of life. Developmental disabilities include mental retardation, autism, epilepsy, Down syndrome, cerebral palsy, and other neurological conditions. Since the waiting list lawsuit was filed, misunderstandings have arisen regarding what outcomes the waiting list lawsuit is attempting to attain. Generally, some have asserted that the waiting list lawsuit is an attempt to get services provided to individuals with developmental disabilities in large, congregate institutional settings, such as Grand Junction Regional Center. Because The Arc of Colorado supports the waiting list lawsuit, this perception has resulted in the belief that The Arc of Colorado also supports the concept of services provided to individuals with developmental disabilities in institutional settings. Both the perception that the waiting list lawsuit is an attempt to obtain services in traditional institutional settings, and that The Arc of Colorado is in support of this notion, are total misconceptions. Sadly, such misconceptions cloud the real issues in the lawsuit and the many positive benefits its success can bring to people with developmental disabilities. This Position Statement will address: 1) what the waiting list lawsuit is attempting to achieve and 2) why The Arc of Colorado supports it.

Background on the Waiting List Lawsuit:

The Lawsuit charges that the Plaintiffs and others on the wait list in Colorado have been determined to be eligible for comprehensive services in Colorado, but the State of Colorado (the "State") is not providing such services in violation of a number of federal laws. More specifically, the Lawsuit charges that the State has continued to violate the federal Medicaid Act and requirements for timely processing of applications, prompt provision of services, freedom of choice and constitutional due process, as well as other laws. The Lawsuit seeks to insure that those on the wait list in Colorado now, and in the future, receive the services to which they are entitled under Medicaid statutes and other laws within a reasonable time after application and determination of Medicaid eligibility. The Lawsuit also challenges the failure of the State to make Medicaid required services available in the least restrictive environment.

For the most part, the Lawsuit is predicated on the following legal principles, statutes, regulations The Waiting List Lawsuit and/or case authority.

Doe v. Chiles, (1998), is an Eleventh Circuit United States Court of Appeals decision which held that states are not required to provide intermediate care facility services for persons with developmental disabilities ("ICF/DD or ICF/MR"). However, when states elect to provide ICF/MR services, as has the State of Colorado, they must provide these services with reasonable promptness to all eligible individuals with developmental disabilities in accordance with the Medicaid Act. The Court stated that, under such circumstances, eligible individuals with developmental disabilities have a federal right to ICF/MR services with reasonable promptness, or ninety days under the statute. The Court also pointed out that a court order requiring ICF/MR services with reasonable promptness does not prevent a state "from continuing to pursue…home and community-based services waiver program" as an alternative.

Second, the Lawsuit asserts the "choice mandate" under the Medicaid Act. This requires that individuals with developmental disabilities who are eligible for ICF/MR services be offered such services, or "feasible alternatives", such as a state's available waiver services. The decision of which service to accept is up to each individual. A state, such as the State of Colorado, that is granted a waiver under the Medicaid Act, must provide assurances that individuals with developmental disabilities can choose between the state's ICF/MR services or those services available under its waiver programs, including home and community-based services.

Third, Olmstead v. Zimring (1999) is a United States Supreme Court decision that enforced the integration requirements under the Americans With Disabilities Act ("ADA"). The Court held that the ADA requires that a state, such as the State of Colorado, administer its programs such as residential services "in the most integrated setting appropriate to the needs of qualified individuals with disabilities." The Court stated that under the ADA, states (such as Colorado) are required to place persons with mental disabilities in community settings rather than in institutions when: 1) the state's treatment professionals have determined that community placement is appropriate; 2) that the transfer from institutional care to a less restrictive setting is not opposed by the person to be transferred; and, 3) the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others with mental disabilities. The least restrictive environment requirement is also supported by Section 504 of the Rehabilitation Act of 1973.

The Arc of Colorado supports all of these principles when applied together. When these principles are applied together, the outcome of the Lawsuit would result in the State being required to provide ICF/MR level of services in small, homelike, community-based settings, or when appropriate, comprehensive waiver services in small home and community-based settings, based upon the choice of each individual with developmental disabilities on the waiting list.

It is important to remember that ICF/MR and Home and Community-Based waiver services imply a level of services that are provided to an individual with developmental disabilities, not a requirement of where the services are provided. ICF/MR services are comprehensive medically-based services and are provided twenty-four hours a day, seven days a week. Home and Community-Based waiver services ("HCBS") are also comprehensive services, but have less stringent regulatory requirements than ICF/MR services. HCBS services are required to be provided twenty-four hours a day, seven days a week. Both are designed to meet the same needs, but in a different manner.

Lawsuit Myths and Reality:

1. Myth-The Lawsuit is an attempt to obtain ICF/MR services for people with developmental disabilities and provide these services in the traditional large congregate institutions such as Grand Junction Regional Center.

   Reality-The Lawsuit seeks ICF/MR and Home and Community-Based level services as chosen by persons with developmental disabilities who are on the waiting list. Both levels of services are sought to be provided in the least restricted environment in accordance with the Supreme Court's decision in Olmstead, and other legal requirements. Thus, if the Lawsuit is successful, individuals on the waiting list will have a choice of the level of services they want and need, and will receive these services, whether they are ICF/MR or Home and Community-Based level of services, in small, homelike community settings.



2. Myth-ICF/MR services can only be provided in large congregate campus institutions such as Grand Junction Regional Center.

   Reality-ICF/MR services can be provided in community settings in homes that serve as few as four individuals. As an example, in Littleton, Colorado, ICF/MR level of services are currently being provided by Good Shepherd Lutheran Home. These services are being provided to persons with developmental disabilities at four homes in community settings. Four individuals with developmental disabilities reside at each home.

   If the Lawsuit is successful, and the Federal District Court orders the State to provide ICF/MR level services to persons with developmental disabilities on the waiting list, residential service providers are available, in addition to Good Shepherd Lutheran Home, to provide services in community settings at homes where small numbers of persons with developmental disabilities reside. ICF/MR services in small group community settings could be provided currently, as well as in the past, but the State has not provided the necessary funding for these services, resulting in numerous persons now waiting for comprehensive services in Colorado.



3. Myth-The Complaint in the Lawsuit seeks only ICF/MR facilities such as large campus-styled institutions at Grand Junction Regional Center and does not seek comprehensive services for persons with developmental disabilities at homes in community settings where one or two persons would reside.

   Reality-First, the Plaintiffs are seeking both ICF/MR level of services, and Home and Community-Based level of services as a feasible alternative. Of primary note is the fact that there is Federal case law authority holding that ICF/MR services are required to be provided to eligible persons with developmental disabilities with reasonable promptness under the Medicaid Act. There is some case law authority that Home and Community-Based waiver services are required to be provided with reasonable promptness under Federal law. Other Courts have held that under Federal law and regulations, states can set caps or limitations on the number of people who can be served under a Home and Community-Based waiver program, as has been done by the State. In other words, Federal case law has decided at least that there is an entitlement to ICF/MR services under the Medicaid Act, but there may not be an entitlement with respect to Home and Community-Based waiver services once a state has reached its self-imposed cap.

   Second, the Lawsuit seeks ICF/MR services in the least restrictive environment for persons with developmental disabilities. A distinction must be made between the terms services and facilities. ICF/MR services are a level of services available to persons with developmental disabilities under the Medicaid Act. They must be provided in accordance with a person's needs. ICF/MR facilities are where the individuals will reside and where the services will be provided. The Medicaid Act permits ICF/MR facilities to accommodate as few as four persons with developmental disabilities, and further permits these facilities (homes, town homes, apartments, etc.) to be located in community settings. The Lawsuit seeks the ICF/MR level of services, but requests that these services be provided in residences where as few as four people with developmental disabilities will reside and that these residences be located in community settings.

   Third, even though the Medicaid Act permits residential facilities to be home for as few as four individuals with developmental disabilities, and permits these facilities to be in community settings, the State traditionally provided ICF/MR services in large congregate institutions. This gives the impression that these services cannot be provided in more inclusive community settings, Good Shepherd Lutheran Home being the exception. In keeping with this anomaly, Community Centered Boards ("CCBs") that currently contract with the State to provide Home and Community-Based waiver services very often house six individuals with developmental disabilities in their congregate group homes.

   Finally, in the Fall of 2000, and at the request of the Lawsuit Plaintiffs and the Plaintiff's attorneys, The Arc of Colorado, in collaboration with local Arc Chapters (the "Arcs"), provided the Plaintiffs with the outcomes the Arcs desired regarding any settlement of the Lawsuit. In October 2000, the Plaintiffs, through their attorneys, presented a settlement proposal to the State. The settlement proposal incorporated many of the outcomes proposed by the Arcs. The settlement proposal by the Plaintiffs included, among other provisions, the following:

   "…all plaintiffs and members of the class will receive appropriate residential services (either ICF/MR, HCBS waiver services, or services under a new Medicaid waiver, to be agreed to by the parties and approved by the federal government) as chosen by each individual by [a date certain], and thereafter, no applicant for residential services will have to wait for services longer than 90 days following date of application."

   "When an individual is determined to be likely to require ICF/MR level care, the defendants shall give the individual or his/her legal representative the choice of an ICF/MR setting (not more than 4 beds) or HCBS waiver services, and the individual or legal representative shall complete an agreed to form showing the information provided and the choice made." "No individual shall be placed in any setting larger than 4 beds. If existing size standards for HCBS placements are smaller than 4 beds, then they shall remain in effect."

This settlement proposal was followed by an additional settlement request in February 2001. In this request, the Plaintiffs, supported by the Arcs, proposed that the State apply for a new HCBS waiver referred to as an "Individualized Budget" waiver and incorporate principles of "direct funding" to consumers and "consumer directed services."

The Arc of Colorado's Position:

The Arc of Colorado supports and advocates for a better quality of life for persons with developmental disabilities. Currently, 2,848 persons with developmental disabilities are waiting for comprehensive services in Colorado, and many of these persons are not receiving any services from the State. A significant number of these individuals are over the age of 40 living with parents who themselves are over 60. In Colorado, there are as many as 5,700 individuals with developmental disabilities in households with parents/caregivers who are 60 years of age and older.

Colorado has a substantial number of young adults who have graduated from high school who are now at home with no services. Not only does this cause a strain on families, but the individual is losing valuable skills learned through special education services. The strain on single-parent homes is even more significant. Some parents are forced to quit their jobs because they must stay home to supervise and care for their adult son or daughter or to leave their loved one unattended while at work.

First and foremost, The Arc of Colorado supports the Lawsuit because to do nothing would leave no options, no hope, and no future for more than 2,848 individuals with developmental disabilities on the waiting list, and their families. The numbers on the waiting list have consistently grown over many years, and will only continue to grow. These individuals have the right to comprehensive services and a future, or at the very least the opportunity to choose whether they want the services that are available. To do nothing would be wrong. The Arc of Colorado is committed to independence, choice, control and self-determination for people with developmental disabilities. This includes having control over, and the choice of, the services the individual needs and desires, with whom and where the individual will live, and the individual having the opportunity for community living. Currently, most of the 2,848 persons with developmental disabilities who are waiting for services do not have independence, choice or control, or the opportunity for self-determination because they still live in the homes of family caregivers, or by themselves without adequate supports. While such living arrangements may be appropriate for certain individuals, the lack of options has taken away the opportunity for independence, choice, control and self-determination, an opportunity that most other Americans have and take for granted.

If the Lawsuit is successful, based upon the best legal case authority and precedent, individuals eligible for ICF/MR level of services under the Medicaid Act will at the very least be entitled to the provision of such services, and these services can be provided in homes in which four people reside, and located in neighborhood settings. Under current law, ICF/MR services may be the only entitlement, and the Olmstead decision and other authorities the only precedents, compelling that these services are provided in the least restrictive environment. If the Lawsuit is successful, individuals on the waiting list will have the option to choose whether to remain in their current living arrangements, or receive ICF/MR level of services in a four-bed group homes in community settings, a choice they do not have now.

Should the Court accept all of the Plaintiffs' claims made in the Lawsuit, individuals waiting for services would not only be entitled to ICF/MR level of services in the least restrictive environment as set forth above, but would also have the opportunity to choose the Home and Community-Based waiver services provided by the State. This would mean that individuals on the waiting list could choose between ICF/MR level of services in settings of not more than four individuals, if that is what they need and desire, or comprehensive waiver services in even smaller settings.

In summary, The Arc of Colorado does not support large campus-style institutional settings for the provision of any comprehensive services to any individual, regardless of the level of care required. No matter the level of care required, such services can and must be provided in homelike, community-based settings with a small number of occupants. The Arc of Colorado supports the objectives of the Lawsuit that seek comprehensive services pursuant to the entitlements under the Medicaid Act in the least restrictive environment for people on the waiting list.