Imagine Different Achieve Different Imagine Different Coalition June

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Imagine Different: Achieve Different! Imagine Different Coalition June 2016 Nancy Rosenau, Ph. D

Imagine Different: Achieve Different! Imagine Different Coalition June 2016 Nancy Rosenau, Ph. D

Preview • The case for family life • Essential components of systems that support

Preview • The case for family life • Essential components of systems that support family alternatives • Reductions in congregate use—tale of two states • Critical lessons learned about: 1. 2. 3. 4. 5. Family support Alternate families Resources (especially Medicaid HSCB Waivers) Facilitators Locus of responsibility • Applications to PA

The case for family life 1. 2. 3. 4. Developmental—neuroscience/research Legal—ADA/Olmstead/DOJ investigations Economic—short/long term

The case for family life 1. 2. 3. 4. Developmental—neuroscience/research Legal—ADA/Olmstead/DOJ investigations Economic—short/long term considerations Ethical—cost/benefit

Irreducible need of childhood “A safe and secure environment that includes at least one

Irreducible need of childhood “A safe and secure environment that includes at least one • • stable, predictable, comforting, and protective relationship with an adult who has made a long-term personal commitment to the child’s daily welfare and who has the • means, • time, and • personal qualities needed to carry it out. Stanley Greenspan (1997)

Elements of systems that support family alternatives to congregate care that reduce facility use

Elements of systems that support family alternatives to congregate care that reduce facility use by children with developmental disabilities 1. 2. 3. 4. 5. 6. 7. 8. 9. Overall cross-disability deinstitutionalization policy Deinstitutionalization plan focus on children Control of admissions and long-term stays in facilities Identification and tracking of children in facilities Accessible funding for family support Mechanism for voluntary placement with an alternate family Flexible array of services and supports for family living Adequate provider base offering support for family living Facilitators with assigned responsibility for pursuing family alternatives for children living in congregate care

Tale of two states—Reduction of congregate facility use by children with DD MICHIGAN 1975

Tale of two states—Reduction of congregate facility use by children with DD MICHIGAN 1975 -1995 • 1984—Governor State of the State goal—no children with DD growing up in facilities by 1986 • Pediatric nursing facilities closed in mid-1980 s • State-operated DD facilities no children by late-1980 s • No private ICF or group home industry for children’s facilities TEXAS 2000 -2016 • Since 2000 dramatic reductions in facility used by children/DD -94% in large ICFs -70% in SNFs -45% in CPS facilities 2100+ moved to families • Pediatric facilities or units closed • • 4 large ICFs 3 nursing facilities 2 child welfare facilities 8 of 9 were voluntary closures

Features Michigan 1975 -1995 Texas 2002 -2016 Leadership DD Regional Center (MORC) leadership with

Features Michigan 1975 -1995 Texas 2002 -2016 Leadership DD Regional Center (MORC) leadership with Coalition of DD child advocates with legislator champion DD central office champion and HHS central office support Policy/legislation Regional demonstration of feasibility led to permanency policy in DD services –from practice to policy • 2001 Legislation requires permanency in DD system and Family-Based Alternatives contractor • Olmstead plan and advisory committee includes focus on children Cross agency involvement Tripartite Agreement (DD, child welfare, health) Primarily DD and CW facilities but PP legislation applies to any facility of 4 or more unrelated children Family support (beyond EPSDT) • Contracts with in-home support, especially behavior supports • Family Subsidy Waivers for respite, home mods, behavior support, flexible family support, consumer directed services, transition services, service coordination Voluntary alternate State DD Regional Centers licensed as Child family as alternative Placing Agencies to recruit and license to DD facilities “Community Training Homes” in DD system • Host Homes as service component in HCBS waiver • DD provider base Facilitator Responsible for institutional exits Contract for Family-Based Alternatives Tracking State deinstitutionalization plan targeted numbers with regional tracking individuals Legislative requirement for all children with DD <22 living in congregate care facilities ranging from large institutions to small group homes in DD and CW Funding State + MA + SSI Waivers + MA + SSI

Factors Contributing to Texas Admissions to ICF, NF, CW facilities: Study of 830 Permanency

Factors Contributing to Texas Admissions to ICF, NF, CW facilities: Study of 830 Permanency Plans Age: Average 17, 14 on admission Sex: 69% male Length of stay: 53% more than two years Disabilities: q 90% ID q 66% behavior challenges q 54% MH q 27% medical q 27% autism q 88% multiple Difficult circumstances Admission reasons: 96% stress related 57% family related • Single parent • Parental illness, disability, MH, substance abuse • Other dependents • Work obligations 42% child not living with parents 30% protective services involvement Family Child High support needs System Lack of resources other than facility 57% service inadequacy 45% 100+ miles from family 17% 200+ miles from family

Texas 1993

Texas 1993

Family life for all children with DD living in congregate care? Depends on: •

Family life for all children with DD living in congregate care? Depends on: • Adequacy of support to families, not the disability of the child • Family’s willingness to accept the intrusiveness of support • Availability of alternate families • Availability of facilitator—guide to find pathway from facility to family life

Family support: Family unit vs. child as recipient Family Child EPSDT Education

Family support: Family unit vs. child as recipient Family Child EPSDT Education

Family support—beyond EPSDT Examples of family support needs Types of supports Respite Housing: adequate

Family support—beyond EPSDT Examples of family support needs Types of supports Respite Housing: adequate and accessible Household chores Routine (non-medical) transportation Routine costs associated with disability • Electricity for medical equipment • Washer/laundromat • Replacement furnishings • Loss of work to stay home with child • Encouragement, advice, friendship • Utilitarian • • • Problem solving • Social networks • Morale • Values

Model for alternate families: Used in TX and MI to reduce facility use •

Model for alternate families: Used in TX and MI to reduce facility use • Distinction from “foster care” in child welfare • Child’s family remains decision-maker and maintains involvement • Alternate family relationship with child’s family (shared parenting) • Locus in DD services • Recruitment, evaluation, selection, matching, training, and supporting alternate family • Michigan state DD Regional Centers • Texas provider agencies • Enhanced supports for children with challenging needs • Systemic safeguards: licensure, monitoring requirements, inspections

Myth: Can’t find alternate families Availability The availability of alternate families is directly related

Myth: Can’t find alternate families Availability The availability of alternate families is directly related to: 1. the energy put into seeking and preparing them 2. the support available to them Recruitment methods 1. Personal network-based 2. Provider-network based— DD culture & experience

Texas 2000 -2015—Prioritization of access to resources for facility exits Olmstead plan Legislation: -Advisory

Texas 2000 -2015—Prioritization of access to resources for facility exits Olmstead plan Legislation: -Advisory Permanency Planning Committee -Children’s Policy Council FY 2000 - 2001 Access to HCBS waivers with Host Homes for large ICFs Individuals can exceed waiver cost cap for health and safety Family Based Alternatives FY 2002 -2003 “Money Follows the Person” for nursing facilities FY 2004 - 2005 HCBS Waiver Amendment for 10 children in nursing facilities FY 2006 - 2007 HCBS Waivers for 50 children in small or medium ICF Waivers for diversion of 100 children at risk of state facility admission FY 2008 - 2009 Access to HCBS Waivers for children in nursing facilities FY 2010 - 2011 Children living in child welfare facilities added to Olmstead plan FY 2012 -2013 HCBS Waiver Amendment for 10 children in child welfare facilities FY 2014 - 2015 Waiver funding for children in child welfare facilities

Facilitator role: The importance of outreach 1. Families of children in facilities not likely

Facilitator role: The importance of outreach 1. Families of children in facilities not likely to initiate § Too leery or weary § Not dissatisfied with facility 2. Families require more than information § Decision is about more than services § System complexity requires a savvy “detective” 3. Locus of responsibility § Identified responsibility at individual level § Facilitator connected to policy and planning § Collective system level repository of individual experience

Difference between “coordinator” and “facilitator” Coordinator Facilitator Allegiance to parental choice Champion for family

Difference between “coordinator” and “facilitator” Coordinator Facilitator Allegiance to parental choice Champion for family life for children Activation--parent request Activation--awareness of child living in facility Ongoing responsibility to caseload Time-limited responsibility until successful transition Utilization of resources within service limits “Whatever it takes” approach

Families’ acceptance of alternate families? When children cannot return home, alternate families become the

Families’ acceptance of alternate families? When children cannot return home, alternate families become the preferred option under three conditions: 1. High quality, well supported alternate families are readily available. 2. The relationship between the birth family and their system contact (facilitator role) is carefully built through time and longevity. 3. The birth family retains the decision about a whether to use an alternate family and which alternate family to use.

Resolving seeming “parental choice” conflicts Permanency goal for child: family life Sufficient quality and

Resolving seeming “parental choice” conflicts Permanency goal for child: family life Sufficient quality and quantity of family alternatives AND facilitator to explore Parental control of decisions about their children Medicaid required choice of offered service options

Locus of responsibility • Decision to prioritize family life over facility life • Overall

Locus of responsibility • Decision to prioritize family life over facility life • Overall cross agency plan--individual office responsibilities • Exits from facilities • Development of alternatives—family support + alternate families • Targeting resources • Tracking • Problem solving • Continuous and persistent discussion to “imagine different—achieve different” • Stakeholder input • Formal • Informal

Critical lessons learned from MI and TX Application to PA? 1. 2. 3. 4.

Critical lessons learned from MI and TX Application to PA? 1. 2. 3. 4. 5. Access to family support Availability of alternate families Access to resources (Medicaid HCBS waivers) Utilization of facilitators Clear locus of responsibility

Taking stock: Involvement of all offices • ? ? ? Cross-agency plan • ?

Taking stock: Involvement of all offices • ? ? ? Cross-agency plan • ? ? ? Children birth through 21 • ? ? ? Children with DD but not ID • ? ? ? Children living long term in all types of facilities • ? ? ? Access to waivers • ? ? ? Waivers with adequate services • ? ? ? Access to alternate families (non-child protective services) • ? ? ? Control of admissions • ? ? ? Review of stays

Coalition Action Memo submitted to DHS • Summarizes research on developmental risks to children

Coalition Action Memo submitted to DHS • Summarizes research on developmental risks to children in congregate care • Provides known data and history of attempts to gather data • Identifies concerns • • • No central tracking of children with DD living in facilities No waiver access for children without ID Alternate families available only through Consolidated Waiver Wait lists for waivers or not on wait list Children with DD in child welfare system Lack of permanency planning • Options for consideration • • • Waiver funding—amendments to existing waivers OR new children’s waiver Children with DD in CYF—Medical foster care rates and/or access to waivers Permanency planning Prioritization of resources and access pathways Facilitators Partner families

Imagine Different Coalition offer and ask • Offer to partner • More than advocacy

Imagine Different Coalition offer and ask • Offer to partner • More than advocacy request for change • Expertise and willingness to help • Ideas for solutions: E. g. , Action Memo with detailed suggestions to achieve needed changes • Educational materials: E. g. , workbooks, papers, website • Available as “sounding board” • Ask to be involved in discussions • • Participation in formal working groups Involvement in informal discussions Include us Check with us

Reference links • Imagine Different Coalition www. imaginedifferent. org • Every. Child, Inc. Texas

Reference links • Imagine Different Coalition www. imaginedifferent. org • Every. Child, Inc. Texas www. everychildtexas. org • Texas Legislative Report regarding Permanency Planning and Family. Based Alternatives http: //www. hhsc. state. tx. us/reports/2015/sb-368 -permanency-planning-report-072015. pdf