Selected Internet Sources
Consumer Direction in Behavioral Health

Updated 5/21/09

This list of selected sites that describe a variety of consumer direction and some related efforts is intended as a resource for people seeking to find out more about consumer direction initiatives.  We have searched the internet using a variety of key words in an effort to prepare a relatively comprehensive list of links to relevant sites.  The list of directly relevant sites for behavioral health services is small at this time.  Many of the sites are from programs or grant efforts that serve people with disabilities and the elderly.  Other sites include policy and research articles that may be relevant. 

General Background

The Center for Self-Determination

Home page for the Center including News, State by State summaries, Newsletters, Events, Publications, Membership and Other Resources.
http://www.self-determination.com

University of Illinois at Chicago National Research and Training Center on Psychiatric Disability

Information about its five-year agenda of self-determination projects including:  increasing consumer choice in treatment and services through advance directives, peer-to-peer services, and other mechanisms; enhancing economic self-sufficiency through real jobs for real wages; promoting consumer participation in mental health financing strategies; strengthening consumer self-determination skills through self advocacy; and advancing promising practices in self-determination services to the level of evidence-based practices.  This involves exploring the effects of self-determination initiatives such as cash and counseling, fiscal intermediaries, brokered service models, Medicaid Home and Community Based waivers, Medicaid buy-in and rehab options, and TANF return-to-work programs for people with psychiatric disabilities.
http://www.psych.uic.edu/uicnrtc/

The first ever collection of papers devoted exclusively to self-determination and mental health
http://www.psych.uic.edu/UICNRTC/sdconfpapers.htm

Federal

CMS System Change Grants
            http://www.cms.hhs.gov/systemschange/default.asp

CMS Real Choice System Change Grants:
            http://www.cms.hhs.gov/realchoice/

SAMHSA - Center for Substance Abuse Treatment: 

Access to Recovery web site with Request for Applications, news release, frequently asked questions.  “The key to implementing the grant program is the States’ ability to ensure genuine, free, and independent client choice of eligible providers.  States are encouraged to support any mixture of clinical treatment and recovery support services that can be expected to achieve the program’s goal of cost-effective, successful outcomes for the largest number of people.”
http://www.atr.samhsa.gov/

SAMHSA CMHS Consumer Affairs Program
            http://www.mentalhealth.samhsa.gov/consumersurvivor/about.asp

CSAT Peer Support Programs
            http://www.samhsa.gov/news/newsreleases/030514nr_recoverycomm.htm

Consumer Directed Models of Personal Care: Lesson from Medicaid, Pamela Doty
            http://aspe.hhs.gov/daltcp/reports/lessons.htm

Independent Choices: An National Symposium on Consumer Direction and Self-Determination for People with Disabilities
            http://aspe.hhs.gov/daltcp/reports/01cfpack.htm

Behavioral Health Consumer Direction Program Examples

Florida Self Directed Care Program: 

NAMI in North Florida:

NAMI in North Florida provided the initial advocacy, coordination with legislators and impetus to develop the Florida SDC program.
http://nassau.nami.org/sdc.htm

Minnesota’s Consumer Direction Initiative
            http://www.dhs.state.mn.us/main/groups/disabilities/documents/pub/DHS_id_017635.hcsp

Example of Rules governing Consumer Directed Personal Care Services
           http://www.state.me.us/rehab/cdpas/cdpas_rules.htm

Texas Health and Human Services Commission: Effectiveness of Consumer Directed Services – First Annual Update
            http://www.hhsc.state.tx.us/pubs/020104_CDS_Update1.html

Related Sites - Consumer/Family Operated Programs

Recovery Homes

This site contains a description of the Oxford House Model for Recovery Homes.  Includes links to a variety of resources.
http://www.oxfordhouse.org/

SAMHSA Mental Health Information Center: Consumer/Survivor Operated Self-Help Programs: A Technical Report

A review of the findings and recommendations from the mental health consumer survivor self-help programs.
http://www.mentalhealth.org/publications/allpubs/SMA01-3510/

Children’s Mental Health –

Children’s systems of care involve many family directed services, flexible wrap-around funding, and a set of values and philosophy that is consumer and family directed.

Center for Mental Health Services
             http://www.mentalhealth.samhsa.gov/cmhs/ChildrensCampaign/

 Promising Practices
             http://cecp.air.org/promisingpractices/#2001

Examples for Elderly and Disabled

Aging Services: Consumer Direction

This web site is part of a national initiative funded by The Robert Wood Johnson Foundation to increase opportunities for older consumers to direct their own care.  A good set of links to other sites. 
http://www.consumerdirection.org/

National Association of State Units on Aging: 

NASUA has provided extensive leadership to states and others seeking to develop consumer direction initiatives for personal care services and other alternatives to nursing homes and institutions.
http://www.nasua.org/

Robert Wood Johnson Foundation: Cash and Counseling Demonstration Site

This site is the home for the Cash and Counseling demonstrations that RWJF has funded. It provides links to the most recent Call for Proposals, the National Program Office, and the Cash and Counseling Site.
http://www.rwjf.org/search/gsa/search.jsp?q=cash+and+counseling&src=sw&x=16&y=11

RWJF News Release  Foundation Aims at Taking Consumer Directed Service Model for Medicaid to National Level
http://www.rwjf.org/news/releaseDetail.jsp?id=1073479314892

Cash and Counseling

National Program Office Site for RWJF Grantees
http://www.cashandcounseling.org/index.html

Survey (1996) on State Administrator’s Perceptions of Consumer Directed Services in Long Term Care:  This site includes information from a survey of state administrators with many concerns centered around quality assurance, fraud and abuse and difficulties in implementation that would probably still be found today, perhaps in a slightly lesser degree.
http://www.freedomclearinghouse.org/documents/finalreport96.htm

Improving the Quality of Medicaid Personal Assistance Through Consumer Direction, Health Affairs, Foster, Leslie, et al.
http://content.healthaffairs.org/cgi/reprint/hlthaff.w3.162v1.pdf

The Cash and Counseling Demonstration:
An Experiment in Consumer-Directed Personal Assistance Services, by Pamela J. Doty, Ph.D., 1998
http://www.independentliving.org/docs4/ar398.html

Advocacy and Education

ADAPT.org:  Current Legislation –

MiCASSA, S. 971 co-sponsored by Senators Harkin, Specter would require states to provide community based attendant services to individuals with disabilities and older Americans.
http://www.adapt.org/casaintr.htm

Money Follows the Person Act S. 1394, co-sponsored with Senators Harkin, Smith, Specter.

Gives states additional resources to provide home and community-based services to individuals choosing to leave a nursing home or institution.  With the new emphasis on the role of state government, some ADAPT groups have promoted CASAs be passed by their state legislatures. Vermont (they call theirs Personal Assistance Services Act - PASA), Ohio (Community Assistance Services Act), Texas, and Georgia (Long Term Care Choice Act) are four examples. New Mexico and Wisconsin have also working on bills. For the latest information on efforts at the state level, get in touch with the ADAPT Contact from that area.

Self Advocacy – Self Advocates Becoming Empowered
            http://www.sabeusa.org/

Center for an Accessible Society

Funded by the National Institute on Disability and Rehabilitation Research
The Center’s page of consumer direction in personal assistance services
http://www.accessiblesociety.org/topics/persasst/consumerdir.htm
This extensive site functions as a communications clearinghouse for journalists
http://www.accessiblesociety.org/index.shtml

Policy Issues

Consumer Directed Home and Community Based Services: Policy Issues – Urban Institute Report
           http://www.urban.org/Template.cfm?NavMenuID=24&template=/TaggedContent/
           ViewPublication.cfm&PublicationID=7379

Heritage Foundation - The Future of Medicaid: Consumer-Directed Care, by James Frogue
           http://www.heritage.org/Research/HealthCare/BG1618.cfm

Consumer Direction and Control – The Center for an Accessible Society.
           http://www.accessiblesociety.org/topics/persasst/consumerdir.htm

Consumer Directed Health Care: Will This Growing Trend Affect the LTC Delivery System:  American Medical Directors Association – Caring for the Ages.
            http://www.accessiblesociety.org/topics/persasst/consumerdir.htm

Annotated Bibliography on Consumer Operated Services
           http://mimh200.mimh.edu/PieDb/01599.htm