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Long-Term Care Services for Individuals with Intellectual &
Developmental Disabilities (IDD): What services is my child eligible for and
why are they so hard to access?
Presented by Community Now! www.communitynowfreedom.org
Who: People with Disabilities, Families and Advocates
What: We believe all people with disabilities should live inquality, accountable community settings and that stateinstitution facilities should be down sized and dollars re-directed to fund community services.
Organization Structure: Statewide non-profit 501(c)(3)organization.
Funding: Accept private donations to support the Mission.
COMMUNITY NOW! ______________________________________________________________
What are long-term care services?
Long-term care services provide daily health care and living needs to qualified individuals
(of all ages) who have a disability or long-term illness in the community or in an
institutional setting.
Source: http://www.dads.state.tx.us/ltss/
What are long-term care services?
Some examples of services include, but are not limited to…
• Adaptive aids • Behavioral supports • Dental • Habilitation • Personal care services • Residential Assistance • Respite • Specialized therapies • Supported employment services • Supported home living
SERVICEOPTIONS
WILL VARY
BY PROGRAM
Texas Medicaid Waiver Programs, Community-Based, Long-Term Care Supports & Services
What is a Medicaid Waiver?
• A “waiver” is an exception to the usual Medicaid requirements, granted to a state by the Centers for Medicare and Medicaid Services. To provide services in home and community-based settings rather than an institution (nursing facility or ICF-ID facility).
• Medicaid Wavier Programs provide long-term care services (daily health care and living needs) to qualified individuals who have a disability or long-term illness.
Source: DADS Websitehttp://www.dads.state.tx.us/services/listofservices.html#physical
Texas Medicaid Waiver Programs, Community-Based, Long-Term Care Supports & Services
What we know?
• Eligibility is determined by Medicaid for the Elderly and People with Disabilities when there is no existing Medicaid coverage. Eligibility is determined when services are offered.
• TxHml Waiver is the only waiver program that considers parental income in the financial determination process, since eligibility for this program is based on SSI eligibility.
• There are several Medicaid Waiver Programs in Texas. Each program has different eligibility requirements, rules, service options, and funding amounts.
Texas Medicaid Waiver Programs, Community-Based, Long-Term Care Supports & Services
Medicaid Waiver programs administered through the TexasDepartment of Aging and Disability Services (DADS)
Nursing Facility Waiver Programs • CBA – Community Based Alternatives • MDCP – Medically Dependent Children’s Program
ICF-ID Waiver Programs • CLASS – Community Living Assistance and Support Services • DBMD - Deaf Blind with Multiple Disabilities • HCS – Home and Community-based Services • TxHml – Texas Home Living Waiver
Texas Medicaid Waiver Programs, Community-Based, Long-Term Care Supports & Services
Medicaid Waiver programs administered through theTexas Department of State Health Services (DSHS) • STAR + PLUS
• Youth Empowerment Services (YES)
STAR + PLUS PROGRAM A Managed Care Program
This program is not available in all counties. Source: http://www.hhsc.state.tx.us/starplus/Overview.htm
• Through these health plans the STAR+PLUS program combines traditional health care (such as doctor visits) and long-term services and support, such as providing help in your home with daily activities, home modifications, respite care (short-term supervision) and personal assistance.
• Service coordination is the main feature of STAR+PLUS. Medicaid clients, their family members and providers work together to help clients coordinate health, long-term and other community support services.
STAR + PLUS PROGRAM A Managed Care Program
• STAR+PLUS is a Texas Medicaid managed care program designed to provide health care, acute and long-term services and support through a managed care system.
• STAR+PLUS provides a continuum of care with a range of options and flexibility to meet individual needs. The program increases the number and types of providers available to Medicaid clients.
• Participants of STAR+PLUS choose a health plan (HMO) from those available in their county, and receive Medicaid services through those health plans.
YES Waiver
• allows more flexibility in the funding of intensive community-based services and supports for children with serious emotional disturbances (SED) and their families
• Is available only in specific counties
Source: http://www.dshs.state.tx.us/mhsa/yes/
The “Interest Lists”
While offered, Medicaid Waiver services are not immediately available. Applicants are placed on an interest list on a first-come, first-served basis.
• There are 107,498 people waiting for Medicaid Waiver services while their name remains on an “interest list”
• The average wait for services varies between 3 – 11 years depending on the waiver program
Source: DADS Interest List Reduction Summary http://www.dads.state.tx.us/services/interestlist/index.html
The “Interest Lists”
• To place your name on the CLASS, DBMD or the MDCP waiting list, call 1-877-438-5658
• To place your name on the HCS waiting list, contact your Local Authority (LA). To find your LA visit, http://www.dads.state.tx.us/contact/mra.cfm
• For information about the STAR + PLUS waiver program http://www.hhsc.state.tx.us/starplus/Overview.htm
• For information about the YES Waiver program http://www.dshs.state.tx.us/mhsa/yes/
Department of Aging & Disability Services
Additional community-based long-term care services administered through DADS include, but are not limited to…
• Client Managed Personal Attendant Services
• Community Attendant Services
• IDD Community Services (Local Authority Services)
• In-Home Family Support Program
Source: http://www.dads.state.tx.us/ltss/
Department of State Health Services
Additional DSHS Services include, but are not limited to, the following services…
• Children with Special Health Care Needs Services Program (CSHCN) http://www.dshs.state.tx.us/cshcn/
• Texas Health Steps Comprehensive Care Programhttp://www.dshs.state.tx.us/thsteps/services_ccp.shtm
Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID)
There are 2 categories of ICF/IID facilities
State Supported Living Centers - A Large State OperatedICF/ID that serves approximately 70 to 550 people
Community-Based ICF/IID
— Small Community ICF/IID (up to 8 people) — Medium Community ICF/IID (between 9 and 13 people) — Large Community ICF/IID (14 or more people)
Source
http://www.dads.state.tx.us/providers/MRA/explanation/dads245_mra_svs.pdf
State Supported Living Centers
What we know?
• Texas maintains 13 large institutions known as State Supported Living Centers – more than any other state
• The Department of Justice, Office of Civil Rights Department found serious deficiencies at multiple facilities, a long history of abuse, neglect, and exploitation and failure to serve Facility residents in the most integrated setting appropriate to their individual needs
• The DOJ continues to monitor the SSLCs as part of a Settlement Agreement filed in federal court in 2009
State Supported Living Centers
• As of July 31, 2012 – “None of the centers have achieved substantial compliance in any of the 20 broad areas.”
• Reports of abuse, neglect and exploitation of SSLC residents is a chronic issue at all 13 facilities
– A total of 2000 incidents of abuse, neglect, exploitation or death were filed with the Office of Independent Ombudsman for State Supported Living Centers from December 1, 2011 – May 31, 2012
• From FY 2004 – 2012 “Involuntary Admissions” have been the most frequent type of SSLC admissions
State Supported Living Centers
• 63% of SSLC residents have behavioral health challenges – an increase of 13% since 2004
“This shift in Level of Need reflects the admission of more capable individuals who exhibit significant behavioral
challenges and have co-occurring mental illness.”
• Recruitment and retention of staff at the SSLCs continue to be a challenge
• SSLC maintenance costs projections for FY 2013 – 2019 are estimated at $576,722,818
State Supported Living Centers
The projected number of Facility residents continues to decrease while projected funding increases.
2011 - 4,098 residents │$13,149.85 per month/resident2012 - 3,982 residents │$13,886.91 per month/resident 2013 - 3,686 residents │$14,662.52 per month/resident
As of June 2012 the average enrollment was 3,898. 246 residents are children.
Average Monthly Rate Comparison
Current costs of state and federally funded residential and
non-residential services for persons with an intellectual
disability and related conditions
17,521.04 State operated ICF-IID/RC (SSLC) costs
4,813.07 Non state operated ICF-IID/RC costs
6,054.27 HCS: Residential Costs 3,343.35 HCS: Non-Residential Costs (F/CC & own/family home)
4,259.02 HCS: All settings
1,374.26 Texas Home Living (TxHml)
Information source for slides 17 – 22 can be found in the links below
2009 Complaint - US Department of Justice http://www.justice.gov/crt/about/spl/documents/TexasStateSchools_cmplt_06-26-09.pdf
2009 Settlement Agreement http://www.justice.gov/crt/about/spl/documents/TexasStateSchools_settle_06-26-09.pdf
DOJ Monitoring Reports http://www.communitynowfreedom.org/DOJ_-_Monitoring_Reports.php
DADS Legislative Presentation – Charge 9 – July 31, 2012http://www.communitynowfreedom.org/uploads/SHHSCharge9-7-31-12.pdf
Legislative Appropriations Request http://cfoweb.dads.state.tx.us/lar/default.asp
Rates of Care Presentation http://www.communitynowfreedom.org/uploads/Rates_Presentation_.pdf
Senate Committee on Health and Human Services Interim Charge #9 presentation http://www.communitynowfreedom.org/uploads/SHHSCharge9-7-31-12.pdf
State Supported Living Centers Long Range Planning Report for 2010 – 2012http://www.communitynowfreedom.org/uploads/sslclongrangeplan2010-2012.pdf
State Supported Living Centers
Where does Texas rank among states?
• Texas ranks 50th on how well they are providing community-based supports to individuals who have intellectual and developmental disabilities being served by Medicaid. Source: UCP: A Case For Inclusion 2012 Report http://www.ucp.org/the-case-for-inclusion/2011/index.html
UCP: A Case for Inclusion 2012 Report
• Texas did not meet the 80/80 standard (at least 80% of all individuals with IDD are served in the community, and 80% of all resources spent on those with IDD are for community support)
• Texas has 13 institutions – 12 states (Alaska, Hawaii, Maine, Michigan, Minnesota, New Hampshire, New Mexico, Oregon, Rhode Island, Vermont, West Virginia and D.C.). Another 12 states have only one institution each.
Services at risk…
• Individuals currently receiving community-based long-term care services are at risk of losing services if funding patterns continue.
Services were eliminated or reduced last Legislative Session. Source: October 2011 Webinarhttp://www.communitynowfreedom.org/uploads/Service_Cuts_Webinar_10-5-11.pdf
Why is hard to access services?
• Texas ranks 50th on how well they provide community-based services – there IS room for improvement but no plan in place
• Texas maintains a service delivery system based on a persons disability diagnosis instead of functional needs
• No single door of entry
• Texas continues to invest heavily in ICF/IID facilities including the 13 State Supported Living Centers
• The interest list for community-based services in Texas continues to increase both in size and length of time on the interest list due to lack of funding for community-based long-term care programs
As the SSLC resident population decreases, daily rates of care will increase. Adopting a statebudget that preserves the expensive system of
institutions, despite the declining resident population, will continue to limit access to
community-based long-term care supports for individuals who have a disability and the desire
to live in the community.
Rate Comparison
What can YOU do?
“Progress is neither automatic nor inevitable...
“Be the change you
wish to see in the world.”
Mahatma Gandhi
What can YOU Do?Educate, Empower, Speak Up!
Attend a hearing Meet with your legislator Attend a peaceful rally Make a phone call, send an Email or fax a letter Start or join a CN! coalition in your community Schedule a CN! presentation Connect with CN!
• Website http://www.communitynowfreedom.org/• Yahoo group http://groups.yahoo.com/group/Community_Now/join• Facebook http://www.facebook.com/communitynowfreedom• Twitter cnowfreedom
What We Do?____________________
• Support efforts to assist people who want to leave State Institutions and move into their communities.
• Support educational demonstrations that encourage immediate action by key Statewide leaders.
• Educate the community through
multi-media presentations regarding
the abuse in Texas' institutions, lack
of accountability and the need
for long-term care systems reform.
• Help produce documentary films to expose the abuse, lack of accountability, and institutional failures in Texas.
• Provide on-going information about the need for long-term care reform, including the reduction of "interest" lists, known as a waiting list, and the closure and consolidation of Texas institutions.
• Organize local Community Now! networks.
• Provide small, one-time grants, up to $250.00 to individuals who leave a Texas institution to live in their community. The “Free Hasseb Fund” Grants provide an opportunity for an individual to purchase a house warming item of their choice.
Community Now! Legislative Platform: 83rd Texas Legislature
State Supported Living Centers (SSLCs)
• Establish an independent bipartisan realignment commission to evaluate and make recommendations regarding the operation and management of SSLCs, including enhanced transition efforts, consolidation and closure of facilities as the population decreases.
• Establish a permanent moratorium on non-forensic admissions to all SSLCs.
• Establish benchmarks and metrics for transition specialists assigned to SSLCs to ensure that progress on transitions from SSLCs to community settings continues to occur.
Rebalancing the Texas Long-Term Services and SupportsSystem
• Direct the Health and Human Services Commission to develop a long-range plan to re-balance long-term services and supports for Texans with disabilities and select a task force comprised of diverse stakeholders to guide plan development.
• Designate all monies saved through enhanced transition, consolidation and closure of SSLCs and private ICF-IIDs to fund slots for individuals waiting on “interest lists” for community-based services and supports.
Ensuring Quality Long-Term Services and Supports
• Ensure that all individuals transitioning from SSLCs or private ICF-IIDs to community settings develop and utilize person-directed plans designed for their individual needs.
• Apply Money Follows the Person protocols to individuals exiting SSLCs.
• Hold individuals who abuse or neglect Texans with disabilities in facilities operated by the state or funded with public dollars accountable for their crimes to the full extent of Texas law.
• Consolidate Medicaid waivers into a service delivery system based on functional need rather than disability diagnosis.
Ensuring Quality Long-Term Services and Supportscontinued…
• Personal attendants and other direct support professionals paid through public programs should receive a wage of at least $10 an hour plus appropriate benefits.
• Expand Consumer Directed Services (CDS) options to all Medicaid community-based services and ensure that information on how to access the CDS option is readily available and accessible.
