Federal Systems Change Grants to States and Territories: 2001-2005

Martin Kitchener, Micky Willmott, Alice Wong and Charlene Harrington, UCSF National Center for Personal Assistance Services.
Updated December 2006.

1. Introduction

This part of the PAS Center website provides state-by-state information on Federal Real Choice Systems Change Grants (RCSCG) to States and Territories for the period 2001-2005. The aim of the two tables and accompanying text is to provide information that is accessible to the public, consumers, advocates, researchers and professionals.

Table 1 shows for each state, the dollar value of RCSCG awards by year and Table 2 shows the total value of the grants awarded each year to states. The accompanying text first introduces the RCSCG initiative and then provides 7 items of comparative information for each of the 18 forms of RCSCG: (1) financial years awarded, (2) total value of grants awarded by year, (3) duration of grant, (4) conditions of the grant (purpose, eligibility); (5) state recipients by year, (6) additional information, and (7) typical activities undertaken by states using this grant. The Appendix at the end of this report lists the RCSCGs awarded by year. Further information about activities in each state and specific grants are available from the sources provided.

1.1 Background to the Real Choice Systems Change grant scheme

Services and supports to enable people with disabilities to live independently in the community vary greatly in scope and innovation across the states. States' efforts to develop these services have been influenced by many factors, including the Americans with Disabilities Act (ADA) which was enacted in 1990 (Dept of Justice, 2004), the 1999 Supreme Court decision in the Olmstead case (U.S. Supreme Court 1999), and the work of advocacy groups. Another key factor has been the provision of Federal grants to improve systems of support for people with disabilities.

The Health Care Financing Administration (now CMS) administered competitive grants that were a precursor to RCSCGs to 12 states in 1998, 1999 and 2000. The grants aimed to foster community-integrated service infrastructures by transitioning people out of nursing homes or diverting unnecessary nursing home admission. Texas, Michigan, Colorado and Rhode Island each received 'Date Certain Grants' of $187,500 in 1998. 'Nursing Home Transition Grants' (approximately $500,000 each) focusing on moving people out of nursing homes were awarded to New Jersey, Vermont, New Hampshire, Wisconsin in 1999 and Pennsylvania, Arkansas, Nebraska and Florida in 2000.

On February 1 2001, President Bush announced the New Freedom Initiative (NFI), a cross-governmental policy and funding program that aims to remove barriers to community living for people with disabilities and provide additional momentum to efforts to comply with the ADA (White House 2005). Later in 2001, President Bush signed an Executive Order outlining the Government's commitment to community-based alternatives to institutional care for people with disabilities (White House 2001). The order directed Federal agencies to work with States to ensure compliance with the Olmstead ruling, all Federal agencies subsequently submitted reports regarding their own Olmstead compliance (Dept of Health and Human Services 2002).

The Department of Health and Human Services (HHS) oversees many programs that aim to help people to live in the community. One of the key agencies within the HHS that has undertaken this work is the Center for Medicare and Medicaid Services (CMS). As part of the NFI, CMS administers a grants scheme called Real Choice Systems Change Grants.1 These grants are described in detail below.

Other agencies within the HHS (e.g., the Administration on Aging, the Health Resources and Services Administration and the Substance Abuse and Mental Health Services Administration) also have NFI programs that compliment those administered by CMS. Other Government Departments that provide grants to promote community integration include the Department of Housing and Urban Development (HUD) and the Department of Labor. The 2004 Progress Report on the NFI summarizes activities in each of these federal departments (White House Domestic Policy Council 2004). Some of these grants are described in the PAS Center report 'Federal Funding to States'.

1.2 RCSCG programs in this report

The RCSCG programs outlined in this report relate only to the support people get to live in the community, and not to other HHS schemes such as 'Ticket to Work' and 'Medicaid Infrastructure Grants' (these are described in the 'workforce' and 'workplace' sections of the PAS Center website). Most publicly-funded Home and Community-based Services (HCBS) are provided by states through Medicaid waivers. Waivers (e.g., 1915(c) and/or research and demonstration waiver programs) may also facilitate the development of innovative services. In some cases, grants were made available specifically to help states develop waiver programs (e.g., 'Independence Plus' grants). Information on 1915(c) and Research and Demonstration waiver programs are not included here but further reports and data are in HCBS section the PAS Center website. 2. Real Choice Systems Change Grants for Community Living (RCSCG).

The overall aim of the RCSCG program is to enable people with disabilities to live in the most integrated setting appropriate (in accordance with the language of the Americans with Disabilities Act, 1990) and to have choices about where they live, their service providers and the way services are delivered to them. The grants are intended to develop service infrastructure, not primarily to provide direct services. Over $2.2 million in grants has been awarded by the CMS between 2001 and 2005 (see Table 2).

These competitive grants were first offered to all states by CMS for financial year (FY) 2001 following a solicitation for one-off, non-competitive 'starter' grants of $50,000 per state earlier that year. Following a high response rate (161 applications from 48 states, the District of Columbia and 2 Territories) no new applications were accepted for FY 2002 and the CMS processed remaining applications from 2001 instead.

The majority of awards in FY 2002 were new grants although supplemental awards were made to 5 recipients of FY 2001 'Real Choice' grants and to the technical assistance programs grantees (Federal Register 2003). Grants offered in FY2003 onwards differed from previous years with only one type of grant that was previously offered ('Community-Integrated PAS and Supports' grants) being available. Grants for national technical assistance centers have remained similar (see Appendix 1) (CMS 2003).

Several new types of grants were offered in 2004, which aimed to help states develop specific features of long-term care systems (e.g., 'Integrating Long Term Supports with Affordable Housing' grants and 'Mental Health: Systems Transformation' grants). However in 2005, only 3 types of grants were offered; 'Aging and Disability Resource Center' grants, 'Family to Family Health Care Information and Education Centers' grants and 'Systems Transformation' grants. The former two had been offered in previous years. This reduction in the types of grants offered in 2005 reflected state and other stakeholders' feedback that grants should be flexible and allow grantees to address broad systemic issues peculiar to that state (CMS 2005b).

States have been encouraged to apply for more than one type of grant each year. All grants encourage consumer involvement in project design and implementation as well as the development of public-private partnerships (Federal Register 2001). Grant activities do not have to be statewide but are required to focus on Medicaid-eligible populations and systems that support them (Federal Register 2003).

Many of the grants compliment existing state efforts to develop HCBS, including Medicaid waivers and Olmstead plans. There is variation between states in the way that grant-funded activities are targeted - some activities are statewide whilst others focus on a specific geographic area or population group. Some states have linked the activities of more than one RCSCG award or activities funded by other sources, including state funds. The way grants are labeled may mask the nature of the initiatives being developed using those funds, e.g., Iowa is developing ways to transition people from institutions to HCBS using a 'Real Choice' grant, not a 'Nursing Facility Transition' grant (CMS 2005).

Details of each of the grants are below. All the grants listed have three features in common, they; (1) are administered by CMS, (2) aim to promote the community integration of people with disabilities, and (3) have been offered after the Olmstead decision in 1999. Information on the types of activity undertaken is also provided.

2.1 Real Choice Systems Change Grants awarded at a state level

'Real Choice' Systems Change Grants (Federal Register May 2001)

Financial Years awarded:

2001, 2002 (also "starter" grants in 2001).

Total value of grants awarded:

$40,819,854 (FY01), $35,604,143 (FY02)

Range of value of grants:

$673,000 - $2,300,000 (most were around $1,300,000.)

Duration of grant:

36 months

Purpose of the grant:

To help states work in partnership with communities to expand and improve community-based long- term care systems.

Organization permitted to apply:

States and territories agencies, with the support and active participation of either: (a) the Governor, State Medicaid Agency, or (b) the agency administering the 1915(c) HCBS waiver.

Number of grant recipients (states):

25 (FY01), 25 (FY02, plus 5 supplementary awards to FY01 recipients)

Additional information:

Congress expressed the preference that State and Consumer Task Forces should jointly develop the applications. Starter grants were worth $50,000 per state and expected to last 3-6 months.

Typical activities undertaken by states using this grant:

Activities undertaken using grants awarded in this category are commonly closely related to the state Olmstead response activity. Many of the grants are used to develop single point of entry systems and to improve existing home and community-based service delivery, including waiver programs and improved housing options (CMS 2004).

  • Single point of entry systems. (E.g. in Florida, the development of statewide Clearinghouse on Disability Information, a web-based information system in Hawaii). Improved partnerships between providers and services, including the coordination of care. (E.g. a review of Maine's PAS policies and the development of interdepartmental quality improvement, the integration of funding models in Massachusetts and the development of a policy center in New Hampshire to review laws and regulations that create barriers to community integration).
  • Consumer-directed long-term care initiatives. (E.g. in North Carolina, the development of a consumer-directed care model).
  • Eligibility determination and assessment. (E.g. develop a format and procedural guidelines for developing person-centered plans in Illinois). Information for consumers. (E.g. the development of an Information, Referral and Assistance model in Minnesota).
  • Involvement of consumers in planning and evaluation of services. (E.g. the development of a consumer satisfaction tool in Michigan). Needs assessment. (E.g. a needs assessment in Idaho, leading to a plan for change). Workforce initiatives. (E.g. Arkansas proposed the development of a worker registry and strategies to recruit and retain in-home workers, including the establishment of a career path. (E.g. Maine proposed the development of a Direct Worker's Guild and Kentucky aimed to develop a curricula and standards for staff). Tests on new methods of providing support and delivering services. (E.g. increasing access to Assistive Technology in Delaware).


Community-Integrated Personal Assistance Services and Supports Grants (CPASS)

Financial Years awarded:

2001, 2002, 2003

Total value of grants awarded:

$7,551,690 (FY01), $5,800,000 (FY02), $4,537,084 (FY03)

Range of value of grants:

$300,000 - $900,000 (most around $700,000).

Duration of grant:

36 months

Conditions of the grant:

Only states that did not receive grants in FY01 or FY02 could apply in FY03. Up to 20% of the grant funds can be used for direct services (Federal Register 2003).

Purpose of the grant:

To improve consumer-directed PAS and ensure PAS provide maximum consumer control.

Organization permitted to apply:

States and territories agencies or any other organization if they have the support and active participation of either the Governor, State Medicaid Agency or agency administering the 1915(c) HCBS waiver. Number of grant recipients (states): 10 (FY01), 8 (FY02), 8 (FY03)

Typical activities undertaken by states using this grant:

These grants are used primarily to develop consumer-directed PAS and single points of entry into LTC. For some states, this involves change to service delivery systems and the need for capacity building (e.g. in Alaska technical assistance for providers) (CMS 2004).

  • Development or improvement of consumer directed PAS (e.g. the extension of the current PAS waiver for adults to include children in Rhode Island and in Oklahoma, the development of an intermediary service where Centers for Independent Living act as business agents for consumers with employer responsibilities).
  • Workforce initiatives such as recruitment, training, standards and competency tests for PAS workers. (E.g. reform of the Nursing Practice Act language to enable the delegation of nursing tasks in Oklahoma).
  • Training for PAS users and the creation of consumer information (E.g. the development of a consumer website in Nevada).
  • Needs assessment (E.g. a community services gap analysis in New Hampshire). Evaluation. (E.g. the evaluation of 'client-directedness' and independence outcomes in Colorado and peer evaluation of consumer satisfaction with PAS in Nevada).


Nursing Facility Transitions, Independent Living Partnership Grants (NFT CIL)

Financial Years awarded:

2001, 2002

Total value of grants awarded:

$2,058,178 (FY01), $1,807,500 (FY02)

Range of value of grants:

$270,000 - $450,000

Duration of grant:

36 months

Purpose of the grant:

To promote partnerships between states and Independent Living Centers that support individuals to transition from institutions to the community.

Organization permitted to apply:

Independent Living Centers, with the support and participation of the State Medicaid agency (or agency administering a relevant section of the 1915(c) HCBS waiver) and at least 2 other consumer-governed organizations.

Number of grant recipients (Centers for Independent Living):

5 (FY01), 5 (FY02)


Nursing Facility Transitions, State Program (NFTSP)

Financial Years awarded:

2001, 2002

Total value of grants awarded:

$9,028,889 (FY01), $6,735,216 (FY02)

Range of value of grants:

$552,000 - $800,000

Duration of grant:

36 months

Purpose of the grant:

To help individuals make the transition from nursing facilities to the community, a range of activity is permitted (E.g. the development of housing strategies).

Organization permitted to apply:

States and territories agencies, with the support and active participation of either the Governor, State Medicaid Agency, or agency administering the 1915(c) HCBS waiver.

Number of grant recipients (states):

12 (FY01), 11 (FY02)

Typical activities undertaken by states using Nursing Facility Transition grants:

The proposals in this grant category include quantified outcomes, such as the number of nursing facility residents transitioned (150 in the Connecticut State Program, 24 in Georgia). Several grants provide funding for additional staff (CMS 2004).

  • Outreach activities to nursing home residents (E.g., the development of a video, word board and picture book in Colorado, a toll-free phone line in West Virginia and the recruitment, training and supervision of peer outreach advocates in Alabama). Identification of people living in nursing homes or to diversion of people from institutions (E.g. the development of a tool for assessing clients in South Carolina). Development of support systems for transitioning clients (E.g. the establishment of a 'Common Sense Fund' to pay for items not usually covered, such as utility deposits in Connecticut. Utah Center for Independent Living proposed a skill building program to prepare people for moving out of institutions).
  • Increased community-housing capacity (E.g. the development of a 'Home Team' in Maryland to collaborate with housing authorities and providers).


Community-based treatment alternatives for children. (Federal Register 2003).

Financial Years awarded:

2003

Total value of grants awarded:

$592,421

Conditions of the grant:

No grant funds to be used for direct services

Approximate value of individual grants:

$100,000

Duration of grant:

up to 36 months

Purpose of the grant:

To assist states to develop comprehensive, Medicaid community-based mental health services for children with serious emotional disturbances who would otherwise need care in a Psychiatric Residential Treatment Facility (PRTF).

Organization permitted to apply:

Any state agency.

Number of grant recipients (states):

6

Additional information:

Medicaid provides inpatient psychiatric services for children under 21 in hospitals and extends Medicaid benefits to children in PRTFs despite the fact that PRTFs do not meet the CMS definition of hospitals. This means that although PRTFs are the primary providers of services for children with serious emotional disturbances, states have been unable to use waivers and provide HCBS instead of institutional care.

Typical activities undertaken by states using this grant:

States receiving these grants research the different options for serving children with serious emotional disturbances (e.g., conduct needs assessments, policy/fiscal analyses), including developing waiver programs or improving existing services (CMS 2004).


Respite for Children (Federal Register 2003).

Financial Years awarded:

2003

Total value of grants awarded:

$573,673

Conditions of the grant:

No grant funds to be used for direct services

Approximate value of individual grants:

$100,000

Duration of grant:

up to 36 months

Purpose of the grant:

To enable states to conduct feasibility studies and explore the development of Medicaid respite projects for caregivers of children. These projects are expected to offer the opportunity for consumer direction.

Organization permitted to apply:

Any state agency

Number of grant recipients (states):

6

Additional information:

The grants could be used to explore the development of services targeted specifically for caregivers of children with a particular condition, for example, children with physical disability or mental illness.

Typical activities undertaken by states using this grant:

The activities using these grants mainly involve research into how respite for family caregivers can be improved, in some cases by developing new Medicaid programs. Some states have targeted specific populations of children (CMS 2004).

  • In Alabama, caregivers of children with serious emotional disturbance are being targeted, a needs assessment will be carried out and an implementation plan for including respite in the state Medicaid plan is proposed.
  • Arkansas aims to expand the number of participants in an existing respite program for children with special healthcare needs from 132 to 275.

Respite for Adults (Federal Register 2003).

Financial Years awarded:

2003

Total value of grants awarded:

$348,139

Conditions of the grant:

No grant funds to be used for direct services

Approximate value of individual grants:

$75,000 - 100,000

Duration of grant:

up to 36 months

Purpose of the grant:

To enable states to assess the feasibility of developing respite projects for caregivers of adults through Medicaid or similar funding streams. These projects are expected to offer the opportunity for consumer direction.

Organization permitted to apply:

Any state agency.

Number of grant recipients (states):

4

Additional information:

The grants could be used to explore the development of services for caregivers of adults with a particular condition, e.g. an adult with mental illness. Typical activities undertaken by states using this grant: States use these grants to improve existing services and explore new models of service delivery (CMS 2004).

  • New York is exploring support for caregivers of Medicaid and non-Medicaid eligible adults with mental and/or physical disabilities, including research of models used in other states.
  • Rhode Island's Respite Care for Adults Feasibility study aims to determine the acceptability of respite as an alternative to institutional or other HCBS.


Living with Independence, Freedom and Equality (LIFE) Account Feasibility & Demonstration (CMS 2004a)

Financial Years awarded:

2004

Total value of grants awarded:

$199,999amp;

Conditions of the grant:

No grant funds to be used for direct services

Approximate value of individual grants:

$99,999 (University of New Hampshire), $100,000 (Wisconsin state health agency).

Duration of grant:

up to 36 months

Purpose of the grant:

To study the feasibility of establishing a savings program for children and adults that would enable them to control their own Medicaid-funded HCBS.

Organization permitted to apply:

Any state.

Number of grant recipients:

2

Typical activities undertaken by states using this grant:

Grantees were the University of New Hampshire Institute on Disability/University Center of Excellence in Disability and Wisconsin Department of Health and Family Services. The University of New Hampshire project involved research to assess factors that may influence the success of a LIFE Accounts savings program (e.g., potential demand, potential and actual ability to save, barriers to saving) and a survey of people who self-direct care for information. The report and findings would be disseminated at a conference and inform a feasibility study and implementation plan for a sustainable LIFE Accounts savings program (CMS 2005).


Money Follows the Person (Federal Register 2003).

Financial Years awarded:

2003

Total value of grants awarded:

$6,527,102

Conditions of the grant:

Up to 10% of grant funds to be used for direct services.

Range of value of grants:

$600,000 - $700,000

Duration of grant:

up to 36 months

Purpose of the grant:

To enable states to reform the design of state long-term care so that funding 'follows the person' and finance arrangements enable individuals to transition between institutions and the community.

Organization permitted to apply:

State agencies

Number of grant recipients (states):

9

Typical activities undertaken by states using this grant:

Some states are exploring broad plans or pilots for community integration that would include policy and financial changes, others aim to improve consumer experience by developing coordinated assessment tools and consumer directed services (CMS 2004).

  • California Pathways is a pilot project in a single community that will test new financing models to transition people out of nursing facilities and into the community. Idaho is building Real Choice grant work by continuing an anti-stigma campaign and conducting an economic and policy analysis of state service utilization since 1995.


Quality Assurance and Improvement in HCBS (Federal Register 2003)

Financial Years awarded:

2003, 2004

Total value of grants awarded:

$9.2 million (2003) $4.3million (2004)

Conditions of the grant:

Only up to 10% of grant funds to be used for direct services.

Range of value of grants:

$351,000 - $500,000 (2003), $417,849 - $500,000 (2004)

Duration of grant:

up to 36months

Purpose of the grant:

To assist states to (a) fulfill their commitment to assuring the health and welfare of individuals who participate in the state HCBS waiver program (b) develop systematic methods to meet statutory and CMS requirements and (c) develop improved methods to involve individuals and community members in quality assurance systems.

Organization permitted to apply:

Any state agency, in 2004 those that already received a QAQI grant in the previous year were not eligible to apply.

Number of grant recipients (states):

19 (2003), 9 (2004)

Typical activities undertaken by states using this grant:

Activities tend to focus on improving the monitoring of HCBS waiver programs, with some states focusing on programs serving particular population groups and others focusing on improving quality assurance across all waiver programs (CMS 2004).

  • Missouri proposes that it will consolidate information systems and improve methods of tracking complaints.
  • Tools that states are developing to help consumers become involved in quality assurance include training. In Connecticut, one aim is to establish a Self Advocate Leadership Institute and in Pennsylvania a consumer Help Line is proposed.


Independence Plus Initiative (Federal Register 2003).

Financial Years awarded:

2003

Total value of grants awarded:

$5,405,594

Conditions of the grant:

Only up to 20% of grant funds to be used for direct services.

Range of value of grants:

$175,000 - $500,000 (most around $400,000 to $500,000).

Duration of grant:

up to 36 months

Purpose of the grant:

This grant intends to assist states in meeting CMS expectations for the approval of self-directed IP waiver programs.

Organization permitted to apply:

State agencies.

Number of grant recipients (states):

12

Additional information:

IP waiver programs are expected to include person-centered planning, individual budgeting, self-directed supports, quality assurance and improvement systems. IP is similar to the 'Cash and Counseling' project where consumers are provided with a monthly allowance based on an individual budget that allows them to manage their own PAS.

Typical activities undertaken by states using this grant:

IP grants are being used to help amend existing waiver programs to allow consumer direction, to develop new consumer-directed programs or to improve the quality of existing consumer-directed programs (CMS 2004). For example:

  • Colorado has 4 consumer-directed programs and aims to use the grant to set up an emergency back-up system for these.
  • Maine intends to develop a consumer-directed HCBS program for adults with MR/DD or autism using a 1915(c) IP template.


Rebalancing Initiative (CMS 2004a)

Financial Years awarded:

2004

Total value of grants awarded:

$2,023,382

Conditions of the grant:

No grant funds to be used for direct services.

Range of value of grants:

$249,500 - $300,000

Duration of grant:

up to 36 months

Purpose of the grant:

To help states develop and implement strategies that decrease reliance on institutional service and increase the availability and diversity of community support. States were required to target a specific issue (e.g. development of a single point of entry and coordinated transport system) and address access, financing LTC, consumer-directed supports and quality management.

Organization permitted to apply:

State agencies. States that received a MFP grant in 2003 who applied were required to explain how this would not duplicate existing activity. No state that received a MFP grant was awarded a Rebalancing Initiative grant in 2004.

Number of grant recipients (states):

7

Typical activities undertaken by states using this grant:

Activities undertaken by grantees may cover specific population groups (e.g., the elderly in Illinois) or all people eligible for Medicaid LTC (e.g., Tennessee) (CMS 2005).

  • The Mississippi Department of Mental Health is using the grant to devise a plan for statewide, coordinated transport for adults and children with disabilities to enable them to access a range of community-based care options.
  • Louisiana Department of Health and Hospitals is using the grant to develop a plan to increase the number of people with MR/DD transitioning to the community and aims to transition at least 270 people from large ICFs/MR by the end of the grant period. (CMS 2005).


Comprehensive Systems Reform (CMS 2004a)

Financial Years awarded:

2004

Total value of grants awarded:

$7,589,863

Conditions of the grant:

No grant funds to be used for direct services.

Range of value of grants:

$2,089,863 (Vermont) & $5,500,000(Wisconsin)

Duration of grant:

up to 36 months

Purpose of the grant:

To enable states to develop and implement a comprehensive LTC reform plan, incorporating; a planning and management structure, improvement of access, financing (removal of barriers in state budgets which inhibit funds from moving around the system and improved consumer control), efforts to ensure the type and supply of services meet the needs and preferences of the population (including workforce development and training) and setting quality and evaluation mechanisms. Organization permitted to apply: State agencies.

Number of grant recipients:

2

Additional Information:

This grant is different to the Rebalancing Initiative grant also offered in 2004 as it assists states in developing comprehensive, not targeted rebalancing. Vermont intends to use the grant to integrate the financing and delivery of acute and LTC services for seniors and people with disabilities.

Typical activities undertaken by states using this grant:
  • The Office of Vermont Health Access in collaboration with the Department of Aging and Independent Living has undertaken to redesign the system and coordinate primary/acute and LTC for elderly and physically disabled adults. Specific aims include the introduction of interdisciplinary teams and single care plans and the development of a reimbursement system for integrated care organizations.
  • Wisconsin is using the grant to develop and implement a comprehensive plan for statewide expansion of managed LTC facilitated by public/private partnerships. It envisages such programs to be implemented in at least one-half of the State by 2007.(CMS 2005).

Integrating Long Term Supports with Affordable Housing (CMS 2004a)

Financial Years awarded:

2004

Total value of grants awarded:

$6,728,653

Conditions of the grant:

No grant funds to be used for direct services.

Range of value of grants:

$720,000 - $900,000

Duration of grant:

up to 36 months

Purpose of the grant:

To coordinate housing with LTC services and increase capacity of accessible housing for people using HCBS. It is not intended to fund nursing home transition or to pay for housing costs.

Organization permitted to apply:

State agencies.

Number of grant recipients:

8

Additional information:

States must already have or plan to develop, dedicated housing coordinators and should develop one of the following; (1) a model for helping seniors to age in place, avoid or reduce risk of institutionalization, (2) a new or amended HCBS waiver program, or (3) an infrastructure for transitioning individuals from institutions.

Typical activities undertaken by states using this grant:

In one example of a state grant activity, the District of Columbia aims to improve access and coordination to LTC with affordable housing for people with mental illness and MR/DD. They estimate 700 consumers who have been "dually diagnosed" and the grant activity will develop partnerships with housing providers to remove barriers to accessing housing and increase home ownership (CMS 2005).

Mental Health: Systems Transformation (CMS 2004a)

Financial Years awarded:

2004

Total value of grants awarded:

$3,255,907

Conditions of the grant:

No grant funds to be used for direct services.

Range of value of grants:

$262,318 - $300,000

Duration of grant:

up to 36 months

Purpose of the grant:

To improve the ability of States to offer evidence-based, consumer-directed and recovery-oriented services to consumers with mental illness.

Organization permitted to apply:

State agencies (two universities were also awarded grants - University of Massachusetts Medical School and Portland State University, OR).

Number of grant recipients:

11

Typical activities undertaken by states using this grant:
  • Under Delaware's 1115 Medicaid Waiver, there is a public-private partnership for children's behavioral health, and in response consumer feedback, Delaware is developing a family psycho-education program relating to children's mental illnesses and severe emotional and behavioral disturbances.
  • The Minnesota Department of Human Services is developing an evidence-based practices database to function as a clinical decision-making tool for parents and providers in the children's mental health service system (CMS 2005).


Portals from EPSDT to Adult Supports (CMS 2004a)

Financial Years awarded:

2004

Total value of grants awarded:

$1million

Conditions of the grant:

No grant funds to be used for direct services.

Range of value of grants:

$500,000 each to Nebraska and the District of Columbia

Duration of grant:

up to 36 months

Purpose of the grant:

To support innovative HCBS practices in screening, assessment and transition for people transferring from children's services to adult services.

Organization permitted to apply:

State agencies.

Number of grant recipients:

2

Typical activities undertaken by states using this grant:

Nebraska and the District of Columbia were recipients of these grants. Nebraska is developing a transition project to improve access to adult-focused tertiary and specialized medical care for SSI-eligible young adults with disabilities. This includes creating an amendment to Nebraska's HCBS Aged and Disabled Waiver, training for practitioners, a pilot project to integrate medical assessment into school transition plans and the development of a statewide system of transition clinics (CMS 2005).


Family to Family Health Care Information and Education Centers (Federal Register 2003).

Financial Years awarded:

2003, 2004, 2005.

Total value of grants awarded:

$1,342,963 (2003) $1,500,000 (2004), $1,600,000 (2005)

Duration of grant:

36 months

Conditions of the grant:

Endorsement from the State Medicaid Director or Governor. No funds available for direct services.

Purpose of the grant:

To enable organizations to establish statewide family-run centers that; (a) provide education and training opportunities for families with children with special health care needs, (b) develop and disseminate information to families and providers, (c) collaborate with other Family-to-Family centers, and (d) promote the philosophy of individual and family-directed supports.

Organizations permitted to apply:

Any non-profit organization. 2003 grantees were not eligible to apply in 2004. Existing Centers of this type (funded through HRSA) were not eligible to apply (i.e. California, Florida, Maine, Minnesota, Tennessee, Vermont) (CMS 2004a). Number of grant recipients (various organizations, not state agencies): 2003 - 9 (approx. $150,000 per state), 2004 - 10 ($150,000 per state), 2005 - 10 ($165,000 per state)

Additional information:

The Health Resources and Services Administration collaborated with CMS to provide this grant.

Typical activities undertaken by states using this grant:

These projects are similar in their aims of providing parents with information, networking and training opportunities and supporting professionals working with parents. E.g., Indiana's Family-to-Family project aims to improve the ability of at least 100 families in each of two regions to care for their child with special healthcare needs (CMS 2004).


Systems Transformation Grants

Financial Years awarded:

2005

Total value of grants awarded:

$26.5 million (2005)

Duration of grant:

60 months

Conditions of the grant:

Grantees must demonstrate meaningful inclusion of stakeholders (including consumers and advocates) in the planning and implementation of the grant activities (CMS 2005c).

Purpose of the grant:

To target (develop or improve) at least 3 of the following 6 elements CMS believes are critical to developing comprehensive and integrated long-term care; (1) access to LTC; (2) consumer-directed services; (3) quality management systems; (4) Information Technology improvements; (5) funding to promote HCBS; and (6) coordination of LTC with affordable, accessible housing (CMS 2005c). Organizations permitted to apply: Any single state agency (e.g., Medicaid Agency, mental health agency, MR/DD agency or Department of Aging). States that received a Comprehensive Systems grant in 2004 could not apply for this grant (Wisconsin, Vermont) (CMS 2005c).

Number of grant recipients (state agencies):

10 ($2,066,699 - $3,022,545 per state)

Additional information:

There is no prescribed target population for this grant.


2.2 National Technical Assistance Grants (not included on the Tables).

National Technical Assistance Exchange for Community living (Federal Register 2003).

Financial Years awarded:

2001, 2002 (to the same recipients in each year)

Total value of grants awarded:

$4,871,242 (FY01), $3,773,000 (FY02)

Duration of grant:

36 months

Conditions of the grant:

No funds may be paid as profit to the recipient organization.

Purpose of the grant:

To provide technical assistance and training, and disseminate information to states, grantees, consumers and the public.

Organization permitted to apply:

Any organization.

Number grants awarded:

2 (FY01), 2 (FY02 supplementary awards to FY01 recipients).

Additional information:

This award was called the 'Community Living Exchange Collaborative: A Technical Assistance Project' in FY02 but went to the same two organizations that received grants in FY01 (Rutgers Center for State Health Policy and Independent Living Research Utilization).


Technical Assistance for Consumer Task Forces (Federal Register 2003).

Financial Years awarded:

2003

Total value of grants awarded:

$549,999

Duration of grant:

36 months

Conditions of the grant:

Only available to organizations where at least half the board of directors (or controlling structure) consists of people with disabilities and cannot to be used for direct services.

Purpose of the grant:

Provide technical assistance to consumer task forces involved with the RCSCG program and ensure consumer involvement in state long-term care reform.

Organization permitted to apply:

Consortia of consumer-controlled organizations were only allowed to apply. Consumers are people with a disability or long-term illness.

Number grant recipients:

1

Additional Information:

The Technical Assistance for Consumer Task Forces website: http://www.tilrc.org/real_choice/Real_Choice_Homepage.htm.


National State-to-State Technical Assistance Program for Community Living (Federal Register 2003).

Financial Years awarded:

2003, 2004 (awarded to different organizations in each year)

Total value of grants awarded:

$4,399,959 (2003) $4,000,000 (2004)

Duration of grant:

36 months

Conditions of the grant:

Grant not to be used for direct services.

Purpose of the grant:

To ensure all Systems Change grantees are supported by; (a) providing on-site state-to-state assistance, (b) developing technical assistance materials, (c) working with individual states, national associations of state agencies, consumer and national organizations to disseminate information and aid effective administration of programs (d) provide and develop expertise for states and (e) feedback to CMS.

Organization permitted to apply:

Any organization or entity.

Number of grant recipients:

1 (2003) 1 (2004)

Additional information:

2003, Rutgers: The State University of New Jersey received this grant. In 2004 Independent Living Research Utilization (ILRU) received the grant (http://www.ilru.org). This continued work established through the National Technical Assistance Exchange for Community Living grant (see above).


2.2 Administration on Aging and CMS joint grant

Aging and Disability Resource Center Grants Program (ADRC)

Financial Years awarded:

2003, 2004, 2005

Total value of grants awarded:

$4,910,790 (2003) $8,970,493 (2004), $14,836,177 (2005)

Conditions of the grant:

Activities must target the elderly and at least one other target population (such as people with serious mental illness).

Range of value of grants:

$200,000 - $800,000

Duration of grant:

up to 36 months

Purpose of the grant:

To help states develop 'one-stop shops' at the community level to help people make informed decisions about their support options and provide a single point of entry to long-term care services.

Organization permitted to apply:

State agencies (state units on aging and Medicaid agencies must be involved).

Number of grant recipients (states):

12 (2003), 12 (2004), 19 (2005)

Additional information:

This program builds on models developed in Wisconsin and other states. At a recent conference two grant recipients presented their progress in creating a single point of entry system - Montana has established a public information site in a mall and New Jersey is working on streamlining services by reforming long-term care financial eligibility and pre-admission screening. 43 states have received ADRC grants. The national technical assistance center is at: http://www.adrc-tae.org.


3. Key Trends - Commentary on Table 1 and Table 2.

Table 2 shows that the total amount awarded to States and state-level organizations decreased steadily from $62 million in 2001 to $33 million in 2003, however the total amount increased again to $42 million in 2005 although fewer different types of grants were awarded in 2005. All states, the District of Columbia and 4 Territories (Guam, American Samoa, Northern Mariana Islands and Puerto Rico) have received some type of grant and there have been 19 different sorts of grants available to state agencies and other state-level organizations (excluding technical assistance grants).

All states and some territories have received at least one grant. The only state which has received less than $1 million in total since 2001 is South Dakota ($200,000 total), along with the two territories of American Samoa and Puerto Rico ($50,000 each). Four states have been awarded 10 different types of grants, but Massachusetts has received the most - 12 different awards (one of these was a supplemental 'Real Choice' grant in 2002). However, the state that has received the most in total is Wisconsin which has been awarded almost $10.5 million total. The mean average total awarded to states and territories (N=55) between 2001 and 2005 is approximately $4 million.

Appendix 1 - Systems Change Grants (by year awarded)

FY2001

Real Choice
Community-Integrated Personal Assistance Services and Supports
Nursing Facility Transition (a). Independent Living, (b). State Programs
National Technical Assistance Exchange for Community Living Grant

FY2002

Real Choice
Community-integrated Personal Assistance Services and Supports
Nursing Facility Transition (a). Independent Living, (b). State Programs
Technical Assistance Grant Exchange for Community Living Grant

FY2003

Respite for Adults
Respite for Children
Community-based Treatment Alternatives for Children
Quality Assurance & Quality Improvement in HCBS
Independence Plus
Money Follows the Person
Community-integrated Personal Assistance Services and Supports
National State to State Technical Assistance Program
Technical Assistance for Consumer Task forces
Family-to-Family Health Care Information and Education Centers.
Aging and Disability Resource Centers

FY2004

Portals from EPDST to Adult Supports Grants
Family to Family Health Care Information & Education Center Grants
Quality Assurance & Quality Improvement in HCBS Grants
Rebalancing Grants
LIFE Accounts Feasibility & Demonstration Grants
Comprehensive Systems Reform Grants
Integrating Long-Term Care Supports with Affordable Housing Grants
Mental Health: Systems Transformation Grants
National State-to-State Technical Assistance Program Grants
Aging and Disability Resource Centers

FY2005

Aging and Disability Resource Centers
Family-to-Family Health Care Information and Education Centers
Systems Transformation

References

Administration on Aging and Centers for Medicare and Medicaid Services (2005) 'New grants will help families in 19 states find needed long term care services.' Press Release, August 18, 2005.

Case,G, Day,N, Blakley,D (Mar 3 2004) 'Implementing Aging and Disability Resource Centers'. CMS Systems Change Conference Baltimore, Maryland http://www.nashp.org/Files/Case,Blakley,_Day.ppt

Centers for Medicare and Medicaid Services (2003) Questions and Answers on the invitation to apply for "Real Choice Systems Change Grants for Community Living" CFDA No.93.779.

Centers for Medicare and Medicaid Services (2004a) Medicaid Program: Real Choice Systems Change Grants 2004 Solicitation Package CFDA No. 93.779, HHS.

Centers for Medicare and Medicaid Services (2004b) News Release, Oct 4: HHS Awards $31 million in Grants to 31 States to Help Individuals with Disabilities and Older Adults. CMS. At: http://www.hhs.gov/news/press/2004pres/20041005a.html

Centers for Medicare and Medicaid Services (2006), Real Choice Systems Change Grants Compendium 5th Edition. At: http://www.cms.hhs.gov/RealChoice/downloads/compendium.pdf

Centers for Medicare and Medicaid Services (2005a) 'HHS gives grants to 17 states to help persons with disabilities live in their communities'. Press Release, September 26, 2005. At: http://www.hhs.gov/news/press/2005pres/20050926.html

Centers for Medicare and Medicaid Services (2005b) FY05 Real Choice Systems Change Grants for Community Living solicitation package announcement, April 29, 2005

Reinhard, S.C. and Salmon, Jennifer (2001). Navigating the Long-term Care Maze: New approaches to Information and Assistance in 3 States. http://www.aarp.org/research/longtermcare/resources/aresearch-import-563-2001-12.html

HHS news Release (16 Apr 2004) HHS Awards Additional $9 Million to Help States Develop Aging and Disability Resource Centers http://www.hhs.gov/news/press/2004pres/20040416a.html

U.S. Department of Health and Human Services (2002) Delivering on the Promise: A Compilation of Individual Federal Agency Reports of Action to Eliminate Barriers and Promote Community Integration. At: http://www.hhs.gov/newfreedom/final/

U.S. Department of Justice (2005) A Guide to Disability Rights Laws. At: http://www.ada.gov/cguide.htm

U.S. Federal Register (Tues May 22 2001) Notices. Volume 66, no. 99. At: http://www.gpoaccess.gov/fr/index.html

U.S. Federal Register (Friday May 30 2003) Notices. Volume 68, no.104. At: http://www.gpoaccess.gov/fr/index.html

U.S. Supreme Court (1999) Olmstead v. L.C. (98-536) 527 U.S. 581 (1999) At: http://supct.law.cornell.edu/supct/html/98-536.ZS.html

White House (2001) Executive Order 13217: Community-based Alternatives for Individuals with Disabilities. At: http://www.whitehouse.gov/news/releases/2001/06/20010619.html

White House Domestic Policy Council (2004) The New Freedom Initiative: A Progress Report. At: http://www.whitehouse.gov/infocus/newfreedom/newfreedom-report-2004.pdf

White House (2005) Empowering through the New Freedom Initiative: The President's New Freedom Initiative. At: http://www.whitehouse.gov/infocus/newfreedom/