Final report and recommendations

              ARIZONA DEPARTMENT OF ECONOMIC SECURITY
DIVISION OF DEVELOPMENTAL DISABILITIES
FAMILY SUPPORT WORK GROUP
FINAL REPORT AND RECOMMENDATIONS
October 1994
Roger Deshaies, Assistant Director
Table of Contents
1. EXECUTIVE SUMMARY ....................................................................................4
1.1. Development of the Family Support Act .................................................. 4
1.2. Purpose of the Family Support Act ..........................................................4
1.3. Establishment of the Family Support Work Group ................................... 4
1.4. Family Support Subsidies and Vouchers .................................................. 5
1.5. Family Support Councils .........................................................................6
1.6. Family Support Workgroup Recommendations ........................................ 6
1.7. Overall Recommendations ......................................................................6.
1.8. Rules Subcommittee Recommendations. ..................................................6
1.9. TraininglEducation Subcommittee Recommendations ............................7. 1. 1 0. Planning Subcommittee Recommendations. ............................................7.
1.1 1 . Budget Subcommittee Recommendations ................................................ 9
2 . RULES SUBCOMMITTEE REPORT ................................................................... 10
2.1. Purpose of the Subcommittee .................................................................. 10
2.2. Working Assumptions of the Subcommittee ............................................ 10
2.3. Highlights of Subcommittee Discussion ................................................... 10 2.4. Subcommittee Methodology ....................................................................1 0 2.5. Recommendations ...................................................................................1 1
2.6. Synopsis of Proposed Rule Changes for Family Support .......................... 12
2.6.1. Article 1. ...................................................................................1 2
2.6.2. Article 3 .................................................................................... 12
2.6.3. Article6 .................................................................................... 12
2.6.4. Article7 .................................................................................... 12
2.6.5. Article 18 .................................................................................. 12
3. TRAXNINGJEDUCATION SUBCOMMITlEE REPORT ..................................... 13
3.1. Purpose of the Subcommittee ..................................................................1 3
3.2. Working Assumptions of the Subcommittee ............................................1 3
3.3. Highlights of Subcommittee Discussion ................................................... 13 3.4. Subcommittee Methodology .................................................................-.1. 3
3.5. Recommendations .................................................................................1..4
3.6. Addendum#l: Family Support Services ................................................... 15
3.6.1. Definition. .............................................................................1..5..
3.6.2. Operating Principles. .................................................................1 5
3.7. Addendum #2: Family Support Training Plan Working Paper ................. 16
3.7.1. Members of the Subcommittee .................................................. 16
3.7.2. Frameworks for Developing a Family Support
Training Initiative ....................................................................1. 6
3.7.3. CONTENT . What We Want to Communicate ........................... 16 3.7.4. AUDIENCE: Who We Want to Influence ................................. 17
3.75. IMPACT: What We Want the Audience to Do .......................... 18
3.7.6. METHODS: How We Will Communicate ................................. 20
3.7.7. DEVELOPMENT: How We Will Build the Training Program .. 22
3.7.8. IMPLEMENTATION: How We Will Deliver the Training Program .................................................................................... 23
3.8. Addendum #3: Proposed Family Support Training Plan ..........................2 4 3.8.1. Need ...................................................................................... 24
3.8.2. Goals and Objectives of this Proposal ........................................ 24
3.8.3. Methods ................................................................................... -24
4. PLANNING SUBCOMMI'ITEE REPORT. ..........................................................3.0
4.1. Purpose of the Subcommittee ................................................................3.0.
4.2. Working Assumptions of the Subcommittee ............................................ 30
4.3. Highlights of Subcommittee Discussion ................................................... 30
4.4. Subcommittee Methodology ..................................................................3..0
4.5. Recommendations ..................................................................................3. 1
5 . BUDGET SUBCOMMITTEE REPORT ..............................................................3.3.
5.1. Purpose of the Subcommittee ..................................................................3 3
5.2. Working Assumptions of the Subcommittee ...........................................3. 3
5.3. Highlights of Subcommittee Discussion ................................................... 33
5.4. Subcommittee Methodology ...................................................................3. 4
5.5. Recommendations .................................................................................3..4
5.6. Addendum #1: Issue Fact Sheet. FY96 Budget Proposal .......................... 36
5.7. Addendum #2: Budget Breakdown .......................................................... 37
5.8. Addendum #3: Defining Individually Designed Living (IDL). .................3 8
6. APPENDICES ......................................................................................................- 39
6.1. Family Support Act (SB1136) .................................................................4 0
6.2. Family Support Work Group Membership ...............................................4 8
6.3. Family Support Work Group Committee Structure ..................................5 1
6.4. Family Support Councils .........................................................................5 3
6.5. Draft Rule Changes ................................................................................. 58
1. EXECUTIVE SUMMARY
1.1. Development of the Family Support Act
Family Support legislation (Senate Bill 1136) was enacted by the Arizona Legislature
in 1993. The Senate bill which ultimately became the Family Support Act had been
initiated by the Arizona Legislative Consortium under the leadership of the
Governor's Council on Developmental Disabilities. The Consortium received
assistance in developing the proposed legislation from the National Conference of
State Legislatures. Advocates, family members, and individuals with a developmental
disability testified in support of the legislation. The bill was well received in
legislative committees and passed both Houses of the Legislature with only one
dissenting vote. The bill was signed by Governor Symington and became law on
April 16,1993. (Family Support Act, Appendix #1)
1.2. Purpose of the Family Support Act
The Family Support Act requires that the Division of Developmental Disabilities take
steps which will expand decision-making opportunities for families and persons with a
developmental disability. Further, it encourages the availability of choices in services,
innovation in service delivery, and gives families and individuals more authority and
responsibility in determining needs and the development of their service plan.
The overall goal of the legislation is to assist persons with a developmental disability
to live in the community with their family or in other arrangements of their choosing.
Services should support individuals and their families while emphasizing the
importance of natural relationships in achieving quality of life and community
presence. Eligibility for the family support program is determined by needs identified
through the Individual Service and Program Planning process.
In addition to promoting a service system based upon family and individual support
principles (see Training and Education Subcommittee Report, Addendum #I), the
legislation calls for the availability of cash subsidies and vouchers. These are methods
of acquiring services which give families and individuals more authority and choice in
the service delivery system.
1.3. Establishment of the Family Support Work Group
The Division of Developmental Disabilities (DDD) was responsible for the
implementation of the Family Support Act following its adoption. In September
1993, Brian Lensch, the DDD Acting Assistant Director, appointed a Family Support
Work Group whose charge was to develop an implementation plan. The thirty-member
Work Group was composed of family members, advocates, service
providers, DDD staff, and representatives from the Department of Health Services
and the Arizona Health Care Cost Containment System Administration. (Work
Group Membership, Appendix #2)
The Work Group was divided into four subcommittees each of which took
responsibility for proposing action on the major requirements of the legislation. A
Steering Committee was established to coordinate the overall implementation plan.
Subcommittees worked on developing administrative rules, a family support budget, a
family support planning and evaluation process, and a training and education plan.
All of the initial subcommittee assignments focused on the mandated sections of the
legislation. Subsequently, subcommittees examined the "permissive" language in the
bill and developed recommendations. Subcommittees were supported in carrying out
their work by DDD Resource Staff and a Resource Consultant. (Subcommittee
Structure and Membership, Appendix #3)
Subcommittees drafted proposals which were presented to the Steering Committee
and full Work Group for consideration. Through the ongoing process of discussion
and review, subcommittee reports and recommendations were finalized by the
Steering Committee and the Family Support Work Group.
1.4. Family Support Subsidies and Vouchers
Prior to the introduction and passage of SB1136, the Division of Developmental
Disabilities established a Voucher System Task Force to study the feasibility of
issuing vouchers to families so that they could directly acquire services. This Task
Force resulted from recommendations which had been made by parents and other
advocates who were seeking ways to empower families and give them greater choice
in the selection of service providers.
When the Family Support Act was passed, it contained authorization for the
utilization of subsidies and vouchers. One section of the bill called for the use of
family support subsidies which would provide cash grants to families or individuals
with a developmental disability with which they could purchase services.
Additionally, the bill permitted the Division of Developmental Disabilities to provide
families and individuals with vouchers that could be used to access services.
The Voucher System Task Force made two recommendations which are consistent
with the legislative intent regarding subsidies and vouchers. First, the Task Force
proposed that the Division seek ways to increase the Assistance to Families Fund
(AT8 in order to expand the number of cash grants available to families and
individuals. Second, the Task Force developed and implemented a voucher
demonstration project in order to pilot the voucher concept.
The Division of Developmental Disabilities has proposed a substantial increase to the
family support subsidies program (ATF) for FY 1996. The voucher demonstration
project ended on June 30,1994 and is currently being evaluated by the DES Office of
Evaluation. The Division is also developing plans to modify the voucher system
based upon the lessons learned from the demonstration project and to offer the
voucher option on a statewide basis.
1.5. Family Support Councils
The Family Support Work Group considered recommending the establishment of
Family Support Councils across the State. This approach has been used in other
states in order to implement family support legislation or bring about system change.
A concept paper was developed by a subcommittee of the Family Support Work
Group and distributed for review and comment (Concept paper and Workgroup
Discussion, Appendix #4). Information was gathered from other states where-Family
Support Councils existed, and a representative from the Colorado Family Support
Council met with the Work Group to discuss the issues.
Following an extensive discussion within the Family Support Work Group, the
membership decided not to recommend the establishment of local Family Support
Councils at this time. The Work Group, however, did recommend that the Steering
Committee, with the addition of new members, should be continued in order to
provide ongoing oversight to the Family Support Act implementation plan. The
Work Group also acknowledged that local Family Support Councils may naturally
emerge through the Family Support planning and education process and
recommended that the Division of Developmental Disabilities assist such
organizations as they seek to become established.
1.6. Family Support Workgroup Recommendations
Each of the subcommittees of the Family Support Work Group developed
recommendations specific to that subcommittee's area of responsibility. All
subcommittee recommendations ultimately were approved by the Steering
Committee and the full Work Group. Additionally, the Work Group developed
recommendations which did not specifically emerge from a subcommittee. A list of
all the recommendations follows:
1.7. Overall Recommendations
1. The Division of Developmental Disabilities should continue the Family Support
Work Group Steering Committee with the addition of new members. The
Steering Committee would provide oversight and advice to the Division as it
implements the various work group recommendations.
2. The Division of Developmental Disabilities should not seek to create a
statewide network of Family Support Councils at this time but, instead, should
utilize existing organizations to gather input for the family support plan. If local
family support groups emerge, the Division should assist such groups in getting
established.
1.8. Rules Subcommittee Recommendations
1. The proposed changes to the existing Rule and the new rule, when combined with
the work of the licensing work group, should be used to provide direction for the
implementation of the Family Support Act (SB1136). DESDDD should
immediately begin the process required to certify the proposed rule changes and
new rule.
2. Division of Developmental Disabilities management should establish policy and
procedures, including changes in the way key individuals, such as case managers, %
are evaluated, which reinforce the philosophical change that the Family Support
Act represents. These policy and procedures should not focus merely on the
mechanics of producing ISPPs, plans and evaluations with the words Family
Support in the title but should instead promote the operating principles of a
Family Support Program.
1.9. TraininglEducation Subcommittee Recommendations
1. The Division of Developmental Disabilities should advance the family support
initiative by implementing the DDD FamQ S- u- pport operating principles which
were adopted in 1986 (Addendum #I).
2. The Division of Developmental Disabilities should communicate with other state
and local agencies to collaboratively utilize resources to communicate and
implement family support.
3. The Division of Developmental Disabilities should identify and remove systems
barriers that impede the implementation of a family support philosophy.
4. The Division of Developmental Disabilities should implement the proposal to
"communicate" the family support initiative on a statewide level (Addenda #2 and
#3).
5. The Division of Developmental Disabilities should ensure that licensing,
certification, policy and contract provisions, and practices are reviewed against
the Family Support operating principles.
1 .lo. Planning Subcommittee Recommendations
1. The Division of Developmental Disabilities should support the planning process
by making staff or consultant assistance available.
a. The Division should dedicate at least a full time Family Support Resource
Specialist who will compile the information gathered through the planning
process and complete a comprehensive implementation and evaluation plan
for family support.
b. The Family Support Resource Specialist should create a "how to" manual
to assist all stakeholders in implementing and maintaining the Family
Support Program.
c. The Family Support Resource Specialist should serve as a
consultantfliaison to all local area planning groups and help coordinate the
activities of future family support resource staff.
d. The Division of Developmental Disabilities should request funding for FY
96 to establish family support resource staff. These staff, along with the
Division level Family Support Specialist, will help implement Family
Support Program initiatives at the local level.
2. Family Support planning should be implemented through a three year process:
- Year 1 = Planning T L f t v ,; o,=
- Year 2 = Implementation (to be determined by Year 1 planning) *; *
- Year 3 = Evaluation (to be defined by the Family Support act, DES ruie andJ - 1 I
plan)
3. Year I planning should be implemented using the following processes and
strategies: . Conduct a comprehensive assessment of communities to identify lead
family support advocates, community resources, and needs. The family
support resource specialist will assist the community in establishing local
area planning groups. . Utilize planning questions including:
. What are the communities' priorities and needs for family support?
What are the communities' resources and strengths to implement and
maintain family support?
What are the communities' roles and responsibilities to establish family
support?
What barriers exist to the implementation of family support?
How should additional resources be allocated and managed?
What does the community look like? Define its geographic boundaries
and population.
4. Community assessments should be conducted in part through thirty-five
awareness sessions coordinated by the Training Subcommittee. Additional
information should be sought from organized and ad hoc groups, family
gatherings, questionnaires, and other means deemed appropriate by local
planning groups.
5. The Division of Developmental Disabilities should invite ongoing review and
oversight by the Family Support Steering Committee to ensure that planning
and policy development is consistent with Family Support legislation and
operating principles.
6. Planning and Training Subcommittee initiatives should be jointly managed by
combining these committees for the implementation of their family support
recommendations.
1 .I 1. Budget Subcommittee Recommendations
1. The subcommittee recommends that the Family Support Steering Committee
and advocacy groups be actively involved in determining how any new Family
Support and waiting list funds are requested (including FY 96) in order to
advance Family Support values and principles. (FY 96 Budget proposal is
Addendum #1)
2. The Division of Developmental Disabilities should define the Family Support
Budget as all allocations for Purchase of Care Services, Supplemental Payment
Program and Assistance to Families (Family Support Subsidy) to be spent for
persons with either an "At Home" or "Individually Designed Living" placement
code. Further, this Family Support Budget should be divided between System's
Managed Funds (i.e., contracts) and Family Managed Funds (i.e., voucher,
subsidies). (Addendum #2)
3. Individually Designed Living (IDL) arrangements should be defined as follows:
A child not residing with its family but living in a setting that is created and
designed by the family. An adult may create their own family. This describes
an autonomous adult living situation in which a person resides in an individually
designed setting that promotes contact with the family and provides flexibility
with respect to choice of time spent within the family and choice of living
companions. Key identifiers are "created by," "designed by," "choice," and
"flexible." (Addendum #3)
4. IDL arrangements should not be subject to the licensing and monitoring
requirements established for Community Residential Settings (CRS).
5. The Family Support Steering Committee should continue to be involved with
DDD in defrning necessary quality review requirements for services delivered in
the family home or IDL arrangements.
6. The Family Support Steering Committee should be involved with DDD in
identifying administrative costs associated with the Family Support Program.
The Family Support Program administrative costs will be identified within the
context of the entire administrative costs of operating DDD.
2. RULES SUBCOMMllTEE REPORT
2.1. Purpose of the Subcommittee
This subcommittee was formed to analyze the requirements of the Family Support
Bill, SB1136, and make recommendations for needed changes to Rules that would be
required to implement the legislation.
2.2. Working Assumptions of the Subcommittee
The committee's early work focused on getting a clear understanding of the Rule
making process and the role that Rules play. The committee's work implements the
philosophy that Rules do not restate or extend statute, and that their primary purpose
is to define the roles and responsibilities of those who are affected by the statue, so
that agencies as well as the public know what is required of them.
2.3. Highlights of Subcommittee Discussion
Several key items came out of the committee's analysis and recommendation. These
were: . The changes required by SB1136 were too many and varied to be handled by
modifications to existing rules. An entirely new article was required in addition
to changes in existing rules.
SB1136 contains the first clear authority in statute for DES and/or the Division
to certify providers. This requirement was referred to the certification office of
DESDDD.
SB1136 establishes family support eligibility criteria which mandates non-institutional
placement and significant family involvement in the development of
the individualized plan. Financial requirements are also addressed in this section
of the statute.
SB1136 authorizes the DESDDD to establish voucher programs utilizing both
State and Title XIX funds. This is a permissive not a mandated authority.
The concept of family support councils as a planning and implementation vehicle
for SB1136 was examined in detail and not chosen at this time. However, a
grass roots, community based planning process is described as the means to
produce the required Family Support Plan.
2.4. Subcommittee Methodology
A phased approach was used to ensure a complete examination of the mandatory or
"shall" sections in the legislation. The Committee secondarily reviewed the
permissive sections of the bill. The process included the entire committee and took
place as follows:
The definition section of the legislation was analyzed to identify needed
changes to Rule definitions. Since Rules should not restate statute, and
several previously undefined terms are defined in SB1136, some definitions
are removed or modified in Rules.
Each "shall" section in the legislation was analyzed for impact on existing
rules and the ability to be accommodated within the structure of existing
rules.
A decision was made that many of the items required in SB1136 could not
be readily accommodated in existing Rule, and a new article would be
required.
Changes to existing Rules and definitions were drafted while a draft outline
of the new article was produced and refined.
The new article was drafted using inputs from other work group
committees.
The draft rule and the changes to existing rules were reviewed and refined
by the subcommittee and the full work group.
2.5. Recommendations
1. The proposed changes to the existing Rule and the new Rule, when combined
with the work of the licensing work group, should be used to provide direction
for the implementation of the Family Support Act (SB1136). DESDDD should
immediately begin the process required to certify the proposed rule changes and
new rule. The full text of the draft rule changes may be found in Section 6.5.
2. Division of Developmental Disabilities management should establish policy and
procedures, including changes in the way key individuals, such as case managers,
are evaluated, which reinforce the philosophical change that the Family Support
Act represents. These policy and procedures should not focus merely on the
mechanics of producing ISPPs, plans and evaluations with the words Family
Support in the title but should instead promote the operating principles of a
Family Support Program.
2.6. Synopsis of Proposed Rule Changes for Family Support
The following sections summarize the Rule changes recommended to implement the
Family Support Bill. For the full text of the Rule changes, consult Section 6.5.
2.6.1. Article 1
Definitions - Deleted Assistant Director (page 4, lines 22 and 23), District @age
4, lines 32-34), and Family Support @age 4, lines 38-41); these definitions are
now in statute. Modified Individual Service and Program Plan team (page 5,
lines 1-9); added Developmental Disabilities Advisory Council (page 4, lines 30
and 31) and Local Planning Group (page 5, lines 14 and 15).
2.6.2. Article 3
Added R6-6-303. Family Support Services Eligibility (page 6, lines 32-35) and
Section B of R6-6 304 (page 6, lines 40-42).
2.6.3. Article 6
Added new R6-6-602 (page 7, lines 3-41). Made changes to R6-6-603 (page 7,
lines 42-52 and page 8, lines 1-42).
2.6.4. Article 7
Added entire article for Family Support including Family Support Plan,
Evaluation, Eligibility and Eligibility Review (pages 9-10).
2.6.5. Article 18
Added R6-6-1801 section B.2. (page 12, line 7).
3. TRAINING/EDUCATION SUBCOMMITFEE REPORT
3.1. Purpose of the Subcommittee
This subcommittee was formed to review the legislative language of SB1136 and the
eligibility guidelines included in the statute. The subcommittee was subsequently
given responsibility to develop a plan to provide training and education about the
Family Support initiative.
3.2. Working Assumptions of the Subcommittee
The subcommittee developed its training and education plan based upon a belief that a
successful family support initiative requires participation and cooperation among
many stakeholders: families, DDD staff, other human service agency staff, service
providers, advocacy groups, and community members. Training and education in
family support is best delivered at the local level by family members who utilize DDD
services.
3.3. Highlights of Subcommittee Discussion
A line-by-line review of the legislation led to recommendations to clarify the bill's
intent through the rule making process. It was not recommended that changes to the
bill be considered during the 1994 legislative session.
A review of the eligibility guidelines resulted in the referral of these guidelines to the
Rules Committee for inclusion in the Family Support Rule.
The subcommittee spent the majority of its working sessions in the development of a
framework for a Family Support TrainingEducation plan that would activate
stakeholders at all levels and encourages community, state agencies, families,
advocacy groups, and providers of service to embrace family support principles.
3.4. Subcommittee Methodology
The subcommittee first reviewed the language of the legislation and eligibility
guidelines. Once that work was completed, it focused on training and the
"communication" of family support.
A draft proposal for a statewide approach to communicating family support was
completed. The plan included budget requirements and defined action needed by
stakeholders to implement the plan.
3.5. Recommendations
1. The Division of Developmental Disabilities should advance the family support
initiative by implementing the DDD Family Support operating principles which
were adopted in 1986 (Addendum #I).
2. The Division of Developmental Disabilities should communicate with other state
and local agencies to collaboratively utilize resources to communicate and
implement family support.
3. The Division of Developmental Disabilities should identify and remove systems
barriers that impede the implementation of a family support philosophy.
4. The Division of Developmental Disabilities should implement the proposal to
"communicate" the family support initiative on a statewide level (Addenda #2 and
#3).
5. The Division of Developmental Disabilities should ensure that licensing,
certification, policy and contract provisions, and practices are reviewed against the
Family Support operating principles.
3.6. Addendum#l : Family Support Services
3.6.1. Definition
Family Support services are designed to promote and enhance a family's ability
to care for its member who has a developmental disability. It is an
individualized and flexible approach which seeks to strengthen intact families,
prevent out-of-home placements, and promote the return home of individuals to
families desiring to reunite. The family support approach encourages the
continuation of family relationships and promotes the values of
interdependence, personal caring, and service priority to families who maintain
their children and adult family members with them at home.
3.6.2. Operating Principles
Family Empowerment - Family control, responsibility, and decision-making
regarding the family member with a developmental disability should be
encouraged and increased.
Family Integrity - Services should promote and enhance family unity,
competence, and independence while minimizing dependency. Services should
be time-limited, delivered in a non-intrusive manner, and help increase the
family's ability to care for its member with a developmental disability. Services
should support the overall health and well-being of families before they are in
crisis.
Family Needs - Services must be based upon the issues identified by families
and must be flexible enough to meet the unique needs of each family requesting
assistance.
Family Values - The values that allow the family to be the best caregiver to its
member with a developmental disability are based on mutual support and
interdependence, long term caring relationships, and unconditional acceptance
of all family members. These values should be promoted throughout the service
system and provide guidance to substitute families providing residential care.
Community Development - Families have many needs which cannot be met
through state funded services. Schools, churches, neighbors, and local
community organizations must be integrated with the family support services
network.
3.7. Addendum #2: Family Support Training Plan Working Paper
This working paper on Family Support Training was produced by the Training
Subcommittee of the Family Support Work Group in two sessions held on 2/18/94
and 4/8/94.
3.7.1. Members of the Subcommittee
Ken Doss, an Adult Developmental Home provider, certified nurse, and
member of the DD Advisory Committee.
Karen Van Epps, sister of person with developmental disabilities, previous
chair of the Governor's Council on Developmental Disabilities, and member
of Arizona ARC.
Becky Hamblin, parent of child with developmental disabilities from
Springerville, Arizona.
Kathy Kelly, Chair of the Training Committee and program coordinator for
Tempe Center for Habilitation.
Connie Sheets, Case Management Coordinator for the Division of
Developmental Disabilities.
Facilitator: Joe Patterson, Consultant to the Family Support Work Group
3.7.2. Frameworks for Developing a Family Support Training
Initiative
The Committee discussed issues of Family Support Training within the
following frames:
1. Content: What We Want to Communicate
2. Audience: Who We Want to Influence
3. Impact: What We Want the Audience to Do
4. Methods: How We Will Communicate
5. Development: How We Will Build the Training hgram
6. Implementation: How We Will Deliver the Training Program
3.7.3. CONTENT: What We Want to Communicate
What constitutes "family support." A definition of family support.
Audiences will learn how family support is the same or is different from the
current services.
How family support is carried out. Audiences will learn how the
procedures and actions are the same or different from how services are
currently being carried out.
Who is supported by family support and who provides family support.
When and where family support occurs.
The benefits of family support:
- Costs and savings in family support - Quality of outcomes for people, opportunity to live a normal life - Empowerment of individuals and families; decreased dependency - Accessing the untapped power and knowledge of parents.
What we all need to do to make family support a reality:
- Trusting the wisdom and competence of families - Learning what families need; listening to families - Changing the way we do business; understanding the difference between
a service paradigm and a supports paradigm
The national family support movement: What has been accomplished, what
is happening across the country, and where is it going in the future.
The Arizona family support movement:
- The Arizona family support legislation - The DDD Mission and Values
- Quality assurance, quality enhancement, quality management - Strategic planning - The ISPP as tool and opportunity for family participation and support - Case management training and development - Other Arizona initiatives
3.7.4. AUDIENCE: Who We Want to Influence
Legislators
Top Management in State Systems
- Division of Developmental Disabilities Assistant Director, Central Office
Staff, District Program Administrators, and District Program Managers - Department of Economic Security Management - AHCCCS Management - Department of Education Managers
DDD Middle Management
- Area Program Managers - Case Management Supervisors and Case Managers
- District Business Managers
Providers
- Executive Directors, Program Directors, and Business Managers of
service providing agencies - Independent Habilitation, Respite, Housekeeping, and Consulting
Services providers - Medical and nursing services providers - Provider associations: AAPD, etc.
Parents and Family Members
- All parents and families of children with disabilities - Foster parents and family members
Advocates
- Formal DDD Advocacy Groups: ARC, GCDD, DAC's, Pilot Parents,
etc. - DDAC - ACCI - Center for Law in the Public Interest
Community Members and General Public
- Churches - Civic groups - Schools and Universities
- Hospitals; medical and dental groups - Businesses, employers
3.7.5. IMPACT: What We Want the Audience to Do
Legislators
- Understand how the current system works in order to understand how
family support is different. Be able to recognize the problems in
traditional service systems which family support addresses (for example:
know that contracted service providers provide most of the services
under the current system). Recognize the forces that are opposed to
family support. - Understand the benefits, both quality and cost effectiveness, of family
support. - Sponsor and support legislation which strengthens family support.
Top Management in State Systems
- Listen to families. Get rid of some "bad habits" such as blaming parents
and approaching parents as adversaries. - h s e n "controls." Be flexible and creative in using the existing
resources within existing rules to provide supports to families. Stop
saying, "Yea, but ..." Get out of the box of traditional service-centered
thinking. Remove barriers. Change or remove rules and regulations
that are barriers to family support.
- Know what "support" is and how it may be different from a "service."
(For example, support may be helping a family purchase a fence to make
a yard safe for a child to play in as opposed to a service to supervise the
child.)
- Provide leadership. Give the "message from the pulpit." Make
supportive statements: "We are committed. This is the right thing to
do." - Budget for family support. Fund family support. Make family support a
part of the contracting process. - Keep the family support idea in the forefront of all planning. Plan
implementation of family support. Use family support principles to
guide decision making. - Give time and energy to family support. Provide staffing and support
those staff.
- Improve understanding among staff. Remove misinterpretations. Ensure
everyone understands the definitions of services and does not apply
unnecessary or capricious rules (for example: understand respite
services, why they are needed, and remove unnecessary barriers to
accessing the service).
- Be accountable. Emure that staff performance is evaluated in light of
family support principles. - Understand the costs and benefits of family support. For example,
improved quality of life for families with improved cost effectiveness for
support dollars spent. - Develop alternative systems for family support. For example, explore
independent case management. - Ensure that the ISPP team process is guided by family inclusion,
participation, and empowerment. - Work in partnership with communities, schools, and businesses to further
family support. - Influence (lobby) other state systems to encourage family support.
DDD Middle Management
- Improve implementation of family support on a local level and in
common daily practice. - Use family support principles to guide problem-solving and decision-making.
- Improve teamwork and partnership with families and others working in
family support.
Providers
- Work in partnership with families. - Develop innovative and flexible supports for families. - Become "customer-centered" and recognize the family as customer. - Join the family support movement rather than be threatened by it.
Parents and Family Members
- Re-establish hope. Rekindle faith that we can work together and that we
can succeed.
- Enable and empower families. Help them see what is possible and how
they can participate in planning, implementation, and evaluation of
supports. Ensure that families are full participants in the ISPP process. - Gain information and knowledge about how supports and services are
developed, funded, and accessed.
- Gain skills in working with the existing systems, personnel, and resources
in their communities. - Gain advocacy skills. For example, the family will be able to clearly
define what the family needs versus asking for an existing service name.
- Be able to access and use various tools for family support. For example,
checklists, guides, handbooks, and directories. - Network with other parents and form partnerships with advocates,
advisory groups, providers, DDD, and communities. - Gain an understanding of how the change to family support can best be
carried out. Understand that the family support movement is evolving,
that there is no quick fix, and that, in order to be successful, it will
require effective partnerships.
Advocates and Advisory Groups
- Gain an understanding of what family support is and how it works. - Develop strategies to further family support by working with families,
influencing state and provider agencies, and promoting legislation.
Community Members and General Public
- Understand family support and the role of community members in
providing family support. - Join with others in partnerships to further family support.
3.7.6. METHODS: How We Will Communicate
Communication will be guided by a few general principles:
- This is no mystery. Families, friends, and communities have always
understood family support. Family support is a national movement
which relies, once again, on some common American capacities. - Parents and family members can communicate the message effectively
because they can speak from experience. - Understanding will be furthered by true dialogue between families,
community leaders, and top management of state and provider agencies. - The message is best delivered in the local community. Involve local
participants in the process.
- Identify and empower the family as "customer."
Several media may be used to get the message out. Some of these are
described below. They are arranged from simple to complex. Some may be
more appropriate for public relations/education, while others will be more
appropriate for in-depth training.
- Flyers: Simple one-page documents which give the basic information
about what family support is, how it works, how to get involved, and
who to contact for further information.
- Brochures: Similar to a flyer but with more information on background,
funding, and participating agencies or groups. - Public service announcements: Brief (usually 30-second) television or
radio announcements which define a salient characteristic of family
support and provides a contact person or number for information about
how to become involved. - Human interest stories: Television or newspaper stories which focus on
what family support means to specific families and communities. These
stories can be developed through contacts with local news and television
reporters. - Documentary video tapes: Professionally produced and edited video
tapes which document experiences of family support from a variety of
perspectives. These tapes may be used in a variety of settings including
formal training sessions, group orientations, or individual viewing.
- Manuals or handbooks: In-depth definitions of family support with
supporting resource materials and references. Will also include tools
such as checklists, planning guides, and evaluation tools. - bcal seminars, panels and forums: These are live, face-to-face meetings
which include family members, community, and agency personnel
presenting issues of family support and responding to questions from
local community groups. - Workshops: Formal training opportunities which include a mix of
presentation and practical exercises for participants. Workshops will
typically include a variety of presenters, written materials, and video
presentations. - Networked organizational learning projects: Organizations join in
partnership to pilot demonstration family support projects. These
projects are called "learning" projects because the participating agencies
agree to learn (that is, adjust their practices) based upon shared
experiences in the projects. They are "demonstration" projects in that
they are fully documented (written materials, video documentaries, etc.)
so they can be shared with others. They are "networked" in that several
demonstration projects are linked so that participants can communicate
and share practices, outcomes, and lessons learned. - Statewide conference on family support: A formal bringing together of
participants after a year's experiences in family support. The conference
might include keynote speakers, invited legislators and other community
leaders, workshops, panels, media presentations, focus groups, and
demonstration project evaluations. - Ongoing family support work group: A permanent working group
including a mix of stakeholders who maintain a focus on family support
and continue to further implementation in Arizona.
3.7.7. DEVELOPMENT: How We Will Build the Training Program
Gather existing materials. Family Support Work Group members are asked
to send copies of materials to the Training Committee Chairperson, Kathy
Kelly, at Tempe Center for Habilitation. Some materials might include:
- Examples of family support materials from other states.
- Minnesota Partners in Policy Making - Arizona Case Management Training materials and video documentaries
- Arizona IHD/UAP Service Coordination Manual
- Any other relevant literature
Investigate and link other state resources. Find out who is doing what. For
example, DES Quality Management initiatives, Partnering Work Groups,
Department of Education initiatives, and University sponsored projects or
programs.
Produce new materials:
- Concept paper which compares and contrasts family support with non-family
support approaches - Flyer - Brochure - Handbook or manual - Video documentaries - Workshop training outlines and materials
Develop local family sumrt coordinators. Family support coordinators
might be members of existing advocacy groups, volunteers, or contracted
providers. Coordinating functions are commonly considered a part of
family support councils and would include:
- Solicit local input and review of materials - Recruit participants for focus groups, panels, workshops, projects, and
documentaries.
- Provide a local communication link for family support activities - Help families participate
Meet with local focus groups. Once the Family Support Work Group has
assembled and summarized existing materials and produced some draft
documents, they will meet with a cross section of stakeholders in several
communities to review the content, gather suggestions for improvement,
recruit local contacts, and lay the groundwork for presentation of the
materials.
3.7.8. IMPLEMENTATION: How We Will Deliver the Training Program
The family support work group will receive this working paper on May 5
with comments and suggestions solicited at that time.
The Training Committee, with input from other work group members, will
produce basic training materials during May and June. These will include:
- Training outline: Basic content and methods
- Tentative training schedule - Brochure and/or flyer - Information packet which includes the brochure, legislation, and related
information
The Family Support Work Group and Training Committee members will
meet with the DDD Assistant Director and Management Team in July to
present the Training Plan for their review and comment. The Assistant
Director and members of the Management Team will be asked to provide
District level support for implementation of the training plan. Management
will be informed on progress at regular intervals.
Training materials will be finalized, and local groundwork in preparation for
training will be completed during July and August. Local coordinators will
be recruited (contracted), and they will begin recruiting the audience for
training.
Implementation will start in September. The first component will be a
"blitz" presented around the state by a carefully selected and prepared "road
team." The road team will have broad representation with a member (or
members) being parents, advocate, case manager, manager, and provider.
The road team will present the first orientation to family support in 2 or 3
hour sessions presented in local communities easily accessible to families.
The procedures will be similar to those followed in the ISPP "blitz" of last
Year.
Other training activities described above (e.g., workshops, organizational
learning projects, conferences, etc.) will be planned with information and
feedback gathered during the blitz phase.
3.8. Addendum #3: Proposed Family Support Training Plan
3.8.1. Need
A successful family support initiative requires participation and cooperation
among many stakeholders: families, DDD staff, other human service agency
staff, service providers, advocacy groups, and community members.
Successful family support will require that these stakeholders possess:
1. shared values
2. knowledge of the svstems for support
3. skills to suvuort families in an effective and cost eficient manner
Training is one way to help the various stakeholders gain these shared values,
increase their knowledge, and learn essential skills for success.
3.8.2. Goals and Objectives of this Proposal
Refer to Working Paver of 4/19/94 for the Training Committee's outline of the
training content, target audiences, impact desired, methods, development, and
implementation of a family support training initiative.
This proposal presents a basic framework for delivery of training to a broad
spectrum of family support stakeholders throughout Arizona with a goal of
informing them and recruiting their participation in the state's family support
initiative.
In order to accomplish this goal, resources must be gathered, materials
produced, training teams organized, and training delivered through a variety of
means in many locations.
(A comment and caution on the word training. This proposal, as well as the
prior working paper, uses the word training, however, other words may be
more appropriate since we do not see this as a one-way process. We have
much to learn also. Better words might be mutual learning or education.)
3.8.3. Methods
Blitz
The method of training described in this proposal has been referred to as a
"blitz" or a "road show." Critical elements of the "blitz" include:
Focus: A blitz is a first step. It is a way to get the message out to the
largest audience in the shortest amount of time. As a result, it must focus
on priority issues and leave room for more extended and ongoing
involvement at a later time.
Consistent message and delivery: The content and the presentation of the
information is consistent across all locations and with all audiences.
Team work: Training is delivered by a team who work together, support
each other, and ensure responsiveness to the community.
h a 1 presentation: The message is delivered in family communities with all
efforts made to make sessions as accessible as possible.
Limited time frame: All audiences are contacted within a relatively short
time so that information is current and a "ground swell" of enthusiasm will
be generated.
Locations
The two urban areas, metropolitan Phoenix and Tucson, account for the bulk of
the state's population and will require more sessions in order to reach that
population. However, an advantage of the urban areas is that greater numbers
can participate without extensive travel.
Rural areas, on the other hand, will require more sessions with smaller groups
in order to reduce travel time and make the sessions accessible to typical family
and community members.
Proposed training locations and numbers of sessions required are outlined
below:
Location Sessions
Phoenix metro area 10
Tucson 4
Sells 1
Casa GrandelCoolidge 2
Globe 1
Pay son 1
Nogales 1
Sierra Vista 1
BisbeeDuglas 1
Safford/Clifton 1
Yuma 1
Lake Havasu 1
Kingman/Bullhead City 1
Prescott 1
Cottonwood 1
Flagstaff 1
Showlow 1
Springerville 1
HolbrooMWinslow 1
Gallup/Window Rock 1
Chinle 1
Tuba City 1
Total Sessions 35
Statewide Training Team
The committee members made nominations for people to include on the training
team. The nominees have not all been contacted to this date, and this list
should be considered tentative and open for discussion, additions, and/or
deletions.
Becky Hamblin, parent, Family Support Work Group (FSWG)
Connie Sheets, State DDD Case Management Coordinator, experienced in
training "blitz," FSWG
Kathy Kelly, Training Committee Chair, FSWG
Joe Patterson, Consultant, experienced facilitator, FSWG
Jannah Scott, OCSHCN, experienced in community development, FSWG
Mary Slaughter, Pilot Parents, experienced organizer, FSWG
Karen Van Epps, Advocate, family member, FSWG
The DDD Assistant Director should be asked to designate a "lead" person to
assist the team in development and implementation of the training.
Local Family Support Contact(s)
Each community will require a local person(s) to organize the training sessions.
Some of the responsibilities of the local family support contact include:
Recruit participation by families and community members. Some recruiting
activities might include presentations to other agencies, the local chamber of
commerce, the city council, schools, clubs, and churches.
Work out logistics of the local session: site, time, etc.
Seek funding, transportation, and other supports for families who may need
assistance in order to participate.
Participate in training sessions.
Steps to Launch the Training Blitz
Finalize Training Team membership
Review this plan and the working paper with the DDD Assistant Director
Review the plan with DDD Management Team to inform and gain
commitments for support and participation
Review plan with Chair of Governor's Council
Present plan to GCDD and ask for assistance in recruitment and
participation
Present plan to advocacy groups and advisory councils to inform and
demonstrate how missions are linked. Recruit support and participation.
Finalize the local contacts
Develop materials:
Flyerpact Sheet
Copy of legislation with interpretive annotations
Video: Case management training materials; other video which may
be appropriate (e.g., June Downing's materials).
Program Manual/Brochure (see the Colorado Family Support
Services Program)
Complete eight ID day planning sessions bringing the Training Team and
the local contacts together in order to:
Define needs
Clarify functions/role/methods
Set objectives
Schedule/logistics
Local contacts complete preparations in their own communities.
Training Team and local contacts present 35 training sessions.
Budget
There are still many unknowns which prevent this budget from being as precise
as might be desired, however, it is the Training Committee's firm opinion that
family support is evervbodv's iob. Therefore, much of the cost of the training
blitz will be covered by existing agency budget allocations and current
personnel positions. As such, these costs are not calculated in dollar amounts
and are noted as in-kind contributions in the budget below. Agency budgets
include those of the DDD as well as other governmental agencies and advocacy
groups. This approach will mean, however, that managers of the collaborating
agencies will need to prioritize family support and ensure that existing resources
are directed to this effort.
Materials
Item
Flyer
Writing and design
Printing costs
Program Manual
Writing
In- kind
Contributions
DDD, 10,000 @ 1 page, 2-
color
DDD 15 Days
New Costs
Consultant - $500
Local Family Support Contacts
Printing
V&o Documentary
Production (taping
and edit)
Duplication (time
and materials)
DDD 1000 @ 25 page wI3
ring binder
DDD Case Management
Training Project
DDD, GCDD, Advocacy, 100
copies of 30-minute tape
8 Planning Sessions with Local Contacts
New Costs
One time stipend to
set up training
session(s) in their
communities. $200
@ 20 parents =
$4,000
Item
Individuals who are
supported by advocacy
groups or advisory
councils
20 family members
who are not supported
though existing
agencies to work with
individuals noted
above and serve as
local "hosts" and
organizers.
In-kind
Contributions
District Advisory Councils,
other advocacy personnel
Item
Group Facilitation and
Documentation
Travel, lodging and per
diem for fwnded
participants
Travel for family
members
In-kind
Contributions
DDD consultant currently
funded for Case Mgmt
training, 10 days
DDD, Advocacy Groups,
Advisory Councils, GCDD
New Costs
20 families @ 500
miles x $.25/mile =
$2,500
35 Community Training Sessions
Lodging for family
members
Per diem for family
members
20 families @ 1
night x $55/night =
$1,100
20 families @ 2
days x $25/day =
$1,500
New Costs
(unsupported
estimate)
$10,000
(unsupported
estimate)
$1,000
Item
Materials preparation,
facilitation and
documentation
Training Team travel,
lodging, and per diem
(this is the most
difficult budget
element to estimate
until further decisions
are made)
Family travel. Most
sessions will be held in
the families local
community, therefore
travel will be minimal
In-kind
Contributions
DDD consultant currently
funded for Case Mgmt
training, 35 days
Some team members are
supported for travel, lodging
and per diem through existing
DDD, GCDD, or advocacy
agency budgets.
4. PLANNING SUBCOMMllTEE REPORT
4.1. Purpose of the Subcommittee
This subcommittee was formed to develop the Family Support planning process
required by statute and which will guide how services will be established, provided,
and evaluated.
4.2. Working Assumptions of the Subcommittee
The Family Support planning process should be implemented at the "grass roots"
level, empowering local groups to develop, implement, and evaluate the family
support program to ensure their needs are met.
The subcommittee recommendations should reflect the following values:
Arizona will enable families with members who have a developmental
disability to strengthen their role as primary caregiver by:
- Preventing inappropriate out-of-home placements - Maintaining family unity
- Reuniting families
Family support initiatives will enhance and promote:
- A sense of community, bringing people together around shared values
- Shared responsibility and collaboration by stakeholders
- Family integrity and competencies - Proactive human service practices
- Mobilization of community resources
4.3. Highlights of Subcommittee Discussion
The subcommittee viewed the Family Support legislation as flexible in respect to the
development of a Family Support Program which will allow for community control
and creativity.
The subcommittee identified numerous existing agencies, councils, and networks to
assist in the planning, implementation, and evaluation of the Family Support Program
and does not, therefore, see the need for new mechanisms (i.e., Family Support
Councils) at this time.
4.4. Subcommittee Methodology
The subcommittee undertook a series of meetings including input fiom the full work
group and other subcommittees from which it developed guidelines and
recommendations for a family support planning process, developed recommendations
for a process to ensure that the family support program is evaluated annually, and
incorporated plans to ensure that family support information is disseminated.
4.5. Recommendations
1. The Division of Developmental Disabilities should support the planning process by
making staff or consultant assistance available.
a. The Division should dedicate at least a full time Family Support Resource
Specialist who will compile the information gathered through the planning
process and complete a comprehensive implementation and evaluation plan for
family support.
b. The Family Support Resource Specialist should create a "how to" manual to
assist all stakeholders in implementing and maintaining the Family Support
Program.
c. The Family Support Resource Specialist should serve as a consultant~liaisonto
all local area planning groups and help coordinate the activities of future family
support resource staff.
d. The Division of Developmental Disabilities should request funding for FY 96 to
establish family support resource staff. These staff, along with the Division level
Family Support Specialist, wili help implement Family Support Program
initiatives at the local level.
2. Family Support planning should be implemented through a three year process:
- Year 1 = Planning - Year 2 = Implementation (to be determined by Year 1 planning) - Year 3 = Evaluation (to be defined by the Family Support act, DES rule and plan)
3. Year I planning should be implemented using the following processes and strategies:
Conduct a comprehensive assessment of communities to identify lead family
support advocates, community resources, and needs. The family support resource
specialist will assist the community in establishing local area planning groups. . Utilize planning questions including:
What are the communities' priorities and needs for family support?
What are the communities' resources and strengths to implement and maintain
family support?
What are the communities' roles and responsibilities to establish family
support?
What barriers exist to the implementation of family support?
How should additional resources be allocated and managed?
What does the community look like? Define its geographic boundaries and
population.
4. Community assessments should be conducted in part through thirty-five awareness
sessions coordinated by the Training Subcommittee. Additional information
should be sought from organized and ad hoc groups, family gatherings,
questionnaires, and other means deemed appropriate by local planning groups.
5. The Division of Developmental Disabilities should invite ongoing review and
oversight by the Family Support Steering Committee to ensure that planning and
policy development is consistent with Family Support legislation and operating
principles.
6. Planning and Training Subcommittee initiatives should be jointly managed by
combining these committees for the implementation phase of their
recommendations.
5. BUDGET SUBCOMMITTEE REPORT
5.1. Purpose of the Subcommittee
This subcommittee was formed to make recommendations that will be used to identify
what constitutes the Family Support Budget for DESDDD. SB1136 requires the
Division to submit an annual budget request that "shall include a specific request for
Family Support Program funding" and "shall annually evaluate the Family Support
Program and submit a written re port... that contains ... administrative costs associated
with the Family Support Program."
5.2. Working Assumptions of the Subcommittee
Throughout the discussions of the Budget Subcommittee, the members agreed that it
was important to not simply identify a budget but to also ensure that this budget
would help to promote the change in public policy that Family Support represents.
Budgets should directly translate agency philosophy. The subcommittee viewed the
budget process as having equal importance to the budget itself and wanted to use the
budget as an educational tool to inform those who review it about Family Support as
a living concept.
5.3. Highlights of Subcommittee Discussion
The subcommittee discussed designing a budget that would reflect how the system
needs to be developing programmatically for the next decade in order to allow the
Family Support philosophy to be implemented throughout DDD.
The subcommittee decided that the Family Support Budget needed to be a part of the
total DDD budget and not seen as a separate stand alone budget ... it needed to be
integrated into the total DDD operations and budget.
The subcommittee determined not to break out "above the line" expenses as part of
the Family Support Budget. Although personnel such as case managers are part of a
Family Support Program, members decided that it would be extremely difficult and
only speculative to assume which portions of such personnel costs might apply.
The subcommittee identified the services that are purchased with "below the line"
funds and could be considered supporting to families (as defined by statute).
The subcommittee reviewed the placement codes used to identify which dollars are
spent in a family supportive manner (i.e., "at home" services). The residential codes
such as ADH, FH, GH, and CRS excluded some potential options that might be
designed by individuals and their families. This led the subcommittee to develop a
new placement code entitled "Individually Designed Living" (IDL). The committee
developed a definition of IDL (see attached).
In order to further demonstrate the concept of Family Support within the budget
document, the subcommittee proposed that the Family Support Budget be divided
- 33 -
between Family Managed Funds (i.e., subsidies, vouchers) and Systems Managed
Funds (i.e., contracts).
Representatives met with DESDDD budgeting staff to discuss the proposed budget
design. There were no objections to this budget format and subcommittee members
were told that this was workable.
As the FY 96 budget request was being developed, the subcommittee chair was
consulted by DESDDD. As a result, the budget submission included the
recommended structure for Family Support, an additional $540,000 for Assistance to
Families, an additional $2,152,600 for adults on the waiting list, and $1,100,000 for
27 FI'E's and operating expenses related to the waiting list request. These were all
identified as part of the Family Support budget related to the implementation of the
bill.
The subcommittee chair also met with the DESDDD licensing staff to discuss issues
related to licensing and/or monitoring of the newly recommended individually
designed living arrangements. The issues related to licensing have not been resolved.
The subcommittee recommends that, as licensing rules and instructions are finalized,
the IDL concept should be considered and the Family Support Work Group involved
in discussion to determine DDD procedures.
5.4. Subcommittee Methodology
Subcommittee work was accomplished primarily at the Family Support Work Group
meetings. Central to the design of the Family Support Budget was a focus on the
Individually Designed Living concept and defining it. There was lively discussion and
debate between subcommittee members and the full Work Group. Consensus was
reached on the IDL concept.
During the month of April, the subcommittee chair met individually with DESDDD
budget and licensing staff to discuss the subcommittee proposals.
As this final report is being completed, it is clear that more work needs to be done
related to the licensing and monitoring issues for proposed individually designed
living arrangements.
5.5. Recommendations
1. The subcommittee recommends that the Family Support Steering Committee and
advocacy groups be actively involved in determining how any new Family Support
and waiting list funds are requested (including FY 96) in order to advance Family
Support values and principles. (N % Budget proposal is Addendum #1)
2. The Division of Developmental Disabilities should define the Family Support
Budget as all allocations for Purchase of Care Services, Supplemental Payment
Program and Assistance to Families (Family Support Subsidy) to be spent for
persons with either an "At Home" or "Individually Designed Living" placement
code. Further, this Family Support Budget should be divided between System's
Managed Funds (i.e., contracts) and Family Managed Funds (i.e., voucher,
subsidies). (Addendum #2)
3. Individually Designed Living (IDL) arrangements should be defined as follows: A
child not residing with its family but living in a setting that is created and designed
by the family. An adult may create their own family. This describes an
autonomous adult living situation in which a person resides in an individually
designed setting that promotes contact with the family and provides flexibility with
respect to choice of time spent within the family and choice of living companions.
Key identifiers are "created by," "designed by," "choice," and "flexible."
(Addendum #3)
4. IDL arrangements should not be subject to the licensing and monitoring
requirements established for Community Residential Settings (CRS).
5. The Family Support Steering Committee should continue to be involved with DDD
in defining necessary quality review requirements for services delivered in the
family home or IDL arrangements.
6. The Family Support Steering Committee should be involved with DDD in
identifying administrative costs associated with the Family Support Program. The
Family Support Program administrative costs will be identified within the context
of the entire administrative costs of operating DDD.
5.6. Addendum #lI:ss ue Fact Sheet, P196 Budget Proposal
Department of Economic Security
Division: Developmental Disabilities
ISSUE TITLE: Family Support
ISSUE: The Division, through the passage of Senate Bill 1136, has made a
commitment to provide Family Support by: (1) Strengthening the family's role as
primary care giver; (2) Preventing inappropriate out-of-home placements; (3)
Maintaining family unity; (4) Reuniting families with members who have been placed
out of the home; and (5) Providing support which includes respite care, assistive
technology, appropriate personal assistance services, parent training and counseling,
vehicular and home modifications, and assistance with extraordinary expenses
associated with the needs of the person with a developmental disability. The
mandatory language in the bill requires the Division to submit a budget pursuant to
this commitment.
IMPACT OF NOT FUNDING: The Division is required to develop a plan to address
Senate Bill 1136. While Senate Bill 1136 does not mandate new or expanded
services, the Division requests funding that is necessary to implement the plan as
budgetary impacts are measured against existing resources.
SOLUTION: Provide $540,000 in additional state funds to fund a critical provision
of the Family Support bill which is the Family Support Subsidy, bringing the
Assistance to Families special line item to $1,003,200. At a maximum level of
$400/family/month ($4,80O/year), this would provide support for an additional 112.5
families for a full year.
Provide $1,766,400 in additional state funds, below the line, to fund those services
not funded in the waiting list, relating to the adult population.
Provide $1,100,000 in additional state funds, above the line, to fund an estimated 27
FI'Es and operating expenditures related to the funding of the above waiting list
related services.
COST:
STATE FUNDS: $,3.406,400
STATE FI'Es: 27.0
* NOTE: These calculations include services not currently received by
an adult segment of the identified clients waiting for
services.
5.7. Addendum #2: Budget Breakdown
PERSONAL SERVICES
EHPRELATED EXPENSES
PROFESSIONAL C OUTSIDE
TRAVEL IN-STATE
TRAVEL OUT-STATE
FOOD
OTEER OPER EXPENSES
CAPITAL EQUIP
TOTAL ALL OTHER OPER
SUBTOTAL
FOSTER CARE
Residential-Hab
Family-Hab
Room and Board
Support Svcs
Home Recruit (SSBG)
ICF/HR-Hab
Surplus
TOTAL FOSTER CARE
PURCHASE OF CARE
Residential-Hab
Room and Board
Residential-ICF/MR
Rehab Instruction Svc
Basic Eduation
Adult Day Services
Day Treat/Training
Early Intervention Pr
Day Treat/Educational
Comm Living Support
Physical Therapy
Speech Therapy
Occupational Therapy
Transportation
Home Nursing
Respite-Contin/Term
Medical Supp Svcs
Supp SvcS-DP
Other Support
Other Support/SSBG
Personal Care
Surplus
TOTAL PURCHASE OF CARE
HOUSEKEEPING PAYMENTS
OUT-OF-DIST PLACEMENT
ASSISTANCE TO FAMILIES
ASH COMM PLACEMENT
STIPENDS & ALLOW
VOC REBAB CONTRACTS
SSBG PASS THROUGH
SPECIAL OLYMPICS
ARS 36-572
SSBG PASS THROUGH
SUBTOTAL BELOW TEE LI
mTAL DOLLARS
DDD Overall Budget
Family
Managed
Funds
System's
Managed
Funds
DDD Family
Support Budget
5.8. Addendum #3: Defining Individually Designed Living (IDL)
Individually Designed Living (IDL) is an arrangement for children not residing with
their family (as defined by statute) but living in a setting that is created and designed
by the family. An adult may create their own family. This describes an autonomous
adult living situation in which a person resides in an individually designed setting that
promotes contact with the family and provides flexibility with respect to choice of
time spent within the family and choice of living companions.
Clarifiers:
Key words: "created by" "designed by" "choice" ..." flexible"
Examples of IDL arrangements:
small (three or less) group of families pool resources to designlcreate their
own residential arrangements (outside of the parent's home)
family leaves home to childladult and designs the use of it, including choice
of companions
adult living in apartmenthome of their own choice
choice of living companions and/or home
Examples of At Home arrangements:
living with parents, extended family or adoptive parents
child temporarily living outside of their family home for a short time (less
than one month), possibly repetitively (not to exceed 114 of the time
outside of the home).
Examples of Out of Home arrangements:
group home
no choice of companions
no choice of location
. ICF, ICF/MR, SNF, Foster Care, ADH
6. APPENDICES
6.1. Family Support Act (SB1136)
State of Arizona
Senate
Forty-f irst Legislature
First Regular Session
1993
House Engrossed Senate Bi 11
FILED
SENATE BILL 1136
AN ACT
AMENDING TITLE 36, CHAPTER 5.1, ARIZONA REVISED STATUTES, BY ADDING
ARTICLE 5; RELATING TO DEVELOPMENTAL DISABILITIES.
Be it enacted by the Legislature of the State of Arizona:
Section 1, Title 36, chapter 5.1, Arizona Revised Statutes, is
amended by adding article 5, to read:
ARTICLE 5. FAMILY SUPPORT
36-596.51. Def initions
IN M I S ARTICLE, UNLESS THE CONTEXT OTHERWISE REQUIRES:
1. mASSISTANT DIRECTOR" MEANS THE ASSISTANT DIRECTOR OF THE
DIVISION OF DEVELOPMENTAL DISABILITIES.
2, *COWUNITY SUPPORTS* MEANS COMMUNITY BASED PROGRAMS DESIGNED TO
PROMOTE INDEPENDENCE, PRODUCTIVITY AND INTEGRATION FOR INDIVIDUALS WITH
DEVELOPMENTAL DISABILITIES AND THEIR FAMI LIES.
3. *DISTRICTa MEANS AN ADMINISTRATIVE AREA OF THIS STATE DESIGNATED
BY THE DIVISION OF DEVELOPMENTAL DISABILITIES IN THE DEPARTMENT OF
ECONOMIC SEWRIM.
4, 'FAMILYm HEANS A GROUP THAT LIVES TOGETHER AND THAT CONSISTS OF
AT LEAST ONE PERSON WITH A DEVELOPMENTAL DISABILIM AND THAT PERSON'S
PARENT*
5. .FAMILY SUPPORTm MEANS SERVICES, SUPPORTS AND OTHER ASSISTANCE
THAT ARE PROVIDED TO FAMILIES WITH MEMBERS WHO HAVE A DEVELOPMENTAL
DISABILITY AND THAT ARE DESIGNED TO:
STRENGTHEN THE FAMILY'S ROLE AS A PRIMARY CARE GIVER.
PREVENT INAPPROPRIATE OUT OF HOME PLACEMENT.
MAINTAIN FAMILY UNITY.
- d)- REUNITE FAMILIES WITH MEMBERS UHO HAVE BEEN PLACED OUT OF THE
HOME.
S.B. 1136
(e) INCLUDE RESPITE CARE, ASSISTIVE TECHNOLOGY, APPROPRIATE
PERSONAL ASSISTANCE SERVICES, PARENT TRAINING AND COUNSELING, VEHICULAR
AND HOME MODIFICATIONS AND ASSISTANCE WITH EXTRAORDINARY EXPENSES
ASSOCIATED WITH THE NEEDS OF THE PERSON WITH A DEVELOPMENTAL DISABILITY.
6. "FAMILY SUPPORT SUBSIDY" MEANS A GRANT THAT IS PROVIDED TO A
FAMILY ON BEHALF OF A FAMILY MEMBER WITH A DEVELOPMENTAL' DISABILITY OR
DIRECTLY TO AN INDIVIDUAL WITH A DEVELOPMENTAL DISABILITY FOR THE PURCHASE
OF SERVICES OR NECESSITIES REQUIRED TO KEEP THE FAMILY MEMBER OR THE
INDIVIDUAL IN THE FAMILY ~ O M E OR THEIR OWN HOME OR NON-INSTITUTIONAL
SETTING.
7. "FAMILY SUPPORT VOUCHER" MEANS AN AUTHORIZATION OF PAYMENT FOR
SERVICES.
8. "INDEPENDENT" OR RINDEPENDENCE* MEANS THE EXTENT TO WHICH
INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES AND THEIR FAMILIES EXERT
CONTROL AND CHOICE OVER THEIR OWN LIVES.
9. "INDIVIDUAL PROGRAM PLAN TEAMn MEANS A GROUP OF PEOPLE
INTERESTED IN OR PROVIDING INDIVIDUAL SUPPORT TO:
(a) AN INDIVIDUAL WITH A DEVELOPMENTAL DISABILITY. IF THAT PERSON
IS UNDER EIGHTEEN YEARS OF A6E OR HAS A LEGAL GUARDIAN, THE TEAM SHALL
FIRST HAVE THE PERMISSION OF THE PARENT OR GUARDIAN.
(b) A PARENT OR GUARDIAN.
(c) FAMILY MEMBERS, HEALTH PROFESSIONALS AND OTHER INDIVIDUALS THAT
A PARENT OR GUARDIAN INVITES TO PARTICIPATE IN THE INDIVIDUAL PROGRAM
PLAN,
(d) A REPRESENTATIVE OF THE DIVISION OR THE DISTRICT PROVIDING THE
PROGRAM.
(e) THE PROVIDER OF SERVICES TO A PERSON WITH A DEVELOPMENTAL
DISABILITY OR A REPRESENTATIVE OF THAT PROVIDER.
(f) THE CASE MANA6ER.
10. "INDIVIDUAL SUPPORT' MEANS SERVICES, SUPPORTS AND OTHER
ASSISTANCE THAT ENABLES A PERSON WITH A DEVELOPMENTAL DISABILITY TO BE
INDEPENDENT, PRODUCTIVE AND INTEGRATED IN THAT PERSON'S COWUNITY AND THAT
IS DESIGNED TO:
(a) ENABLE THE PERSON TO CONTROL THAT PERSON'S ENVIRONMENT AND HAVE
M E MOST INDEPENDENT. LIEE POSSIBLE.
(b) PREVENT PLACEMENT IN A MORE RESTRICTIVE LIVING ARRANGEMENT THAN
IS NECESSARY.
(c) ENABLE THE PERSON TO LIVE, LEARN, WORK AND ENJOY LIFE IN THE
C W N I M ,
(d) INCLUDE APPROPRIATE PERSONAL ASSISTANCE SERVICES, ASS ISTIVE
TECHNOLOGY, VMICUtAR AND HOME mlOIFICATION, SUPPORT AT WRK AND
fRANSPORTAlIoN.
11, nINlE6RATION' EMS THAT PERSONS WITH DEVELOPMENTAL DISABILITIES
AND THEIR FAMILIES:
(a) PARTICIPATE IN THE C O m U N I M ACTIVITIES AND EMPLOYMENT AS
THOSE PERSONS HITHOUT DISABILITIES.
(b) USE THE SAME COWUNITY RESOURCES AS THOSE PERSONS WITHOUT
DISABILITIES,
S.B.
(c) RESIDE IN HOMES THAT ARE PART OF THE CMUNITY.
(d) HAVE CONTACT WITH PERSONS WITHOUT DEVELOPMENTAL DISABILITIES.
12. *PARENTn INCLUDES A GUARDIAN, A LEGAL CUSTODIAN AND A PERSON
ACTING IN THE PLACE OF A PARENT. PARENT DOES NOT INCLUDE A PAID CARE
PROVIDER.
13. "PRODUCTIVITYm MEANS ENGAGEMENT IN INCOME PRODUCING WORK THAT IS
MEASURED THROUGH IMPROVEMENTS IN INCOME LEVEL, EMPLOYMENT 'STATUS OR JOB
ADVANCEMENT OR ENGAGEMENT IN WORK THAT CONTRIBUTES TO A HOUSEHOLD OR
UPHUNITY.
14, 'THERAPEUTIC SERVICES" MEANS OCCUPATIONAL, PHYSICAL, SPEECH AND
LANGUAGE, RESPIRATORY, VISION AND OTHER THERAPIES TO INCREASE, MAINTAIN OR
IMPROVE THE FUNCTIONAL CAPACITIES OF INDIVIDUALS WITH DISABILITIES.
36-596.52. Family s u ~ ~ oprrtoq ram: administration: annual
report
A. THE D I V I S I ~ L ALDM INISTER A FAMILY SUPPORT PROGR4M SUBJECT
TO FUNDING APPROPRIATED BY THE LEGISLATURE OR OTHERWISE AVAILABLE FOR THIS
PURPOSE. THE DIVISION SHALL ADOPT RULES TO IMPLEMENT THIS ARTICLE.
B, THE DIVISION'S ANNUAL BUDGET REQUEST SHALL INCLUDE A SPECIFIC
REQUEST FOR FAMILY SUPPORT PROGRAM FUNDING.
C. THE DIVISION SHALL DEVELOP A FAMILY SUPPORT P U N TO:
1, ASSESS NEEDS, EnABLISH GOALS AND SET PRIORITIES FOR THE
PROVISION OF FAMILY SUPPORT SERVICES.
2. PROVIDE A COORDINATED DELIVERY OF FAMILY SUPPORT SERVICES.
3. DEVELOP COMPREHENSIVE SERVICES, RESOURCES AND PROGRAMS FOR
FAMILIES,
4, REVIEW AND COmENT ON PLANS AND SERVICES THAT ARE PROVIDED BY
STATE AGENCIES AND THAT AFFECT THE FAMILY SUPPORT PUN.
D. THE DEVELOPMENTAL DISABILITIES ADVISORY COUNCIL SHALL REVIEW THE
PLAN PRESCRIBED UNDER SUBSECTION C.
E. THE DIVISION M Y COORDINATE AND ASSIST IN COORDINATING EFFORTS
BY PUBLIC AND PRIVATE AGENCIES TO PROVIDE FAMILY SUPPORT SERVICES, THESE
EFFORTS INCLUDE:
1. IDENTIFYING SERVICES PROVIDED BY DIFFERENT AGENCIES TO ELIMINATE
DUPLICATION,
2. DESIGNING AREAS OF RESPONSIBILITY FOR SERVICES, IDENTIMING GAPS
IN SERVICES AND ASSIGNING RESPONSIBILITY FOR PROVIDING MISSING SERVICES.
3, COORDINATIffi PLANNING AND IMPLEMENTATION M N 6 AGENCIES AND
CONSUMER GROUPS TO ENSURE THAT INTERAGENCY PRSRAMS RECEIVE FULL SUPPORT
FROM ALL AFFECTED PERSONS AND AGENCIES.
F. THE DIVISION SHALL WORK WITH FMILIES TO DEVELOP CRITERIA TO BE
USED AS A STANDARD OF SERVICES BASED ON NEED AND USED DURING THE
INDIVIDUAL PRO6RAM PLAN PROCESS TO DETERMINE FMILY ELIGIBILITY FOR FAMILY
SUPPORT SERVICES. TO DO THIS THE DIVISION HAY:
1. USE EXISTIN6 DISTRICTS AS THE SIN6LE ENTRY POINT FOR FAMILIES
SEEKING SERVICES FRCm THE DIVISION AND THE FAMILY SUPPORT PRO6RAM.
2. WE EXISTIN6 PUBLIC AND PRIVATE LOCAL AGENCIES, FACILITIES AND
RESOURCES, INCLUDING PARENT ADVISORY GROUPS, TO CARRY OUT THE DAILY
OPERATIONS OF THE FAMILY SUPPORT PROGRAM.
S.B. 1136
3. PROVIDE GRANTS TO OR CONTRACT WITH AGENCIES, GRANTEES AND
VENDORS TO PROVIDE FAMILY SUPPORT SERVICES, SUBJECT TO FUNDING
APPROPRIATED BY THE LEGISLATURE OR OTHERWISE AVAILABLE FOR THIS PURPOSE,
ESPECIALLY I N REGIONS OF THIS STATE THAT ARE INADEQUATELY SERVED.
4. PROVIDE TECHNICAL ASSISTANCE TO AGENCIES AND CONSUMER GROUPS
THAT ARE DEVELOPIS OR OFFERIS FAMILY SUPPORT SERVICES, RESOURCES AND
PROGRAMS.
5. USE AVAILABLE STATE, REGIONAL AND LOCAL MEDIA TO SUPPORT
OUTREACH TO FAHI LIES.
6. EXPAND THE HEARING PROCESS IN THE DEPARTMENT TO INCLUDE
REVIEWING FAUILY SUPPORT PROGRACI E L I G I B I L I M DECISIONS.
7. PROVIDE FUNDIN6 AND OTHER RESOURCES FOR TECHNICAL ASSISTANCE,
RESEARCH, EDUCATION, PRESERVICE AND IN-SERVICE TRAIN IN6 AND OTHER STAFF
DEVELOPMENT RELATING TO FAMILY SUPPORT SERVICES.
6. THE DIVISION MY:
1. ACT AS AN ADVOCATE FOR FAMILIES WITH MEMBERS WITH DEVELOPMENTAL
DISABILITIES.
2. ADVOCATE FOR FAMILY SUPPORT SERVICES BEFORE THE LEGISLATURE, THE
PUBLIC, THE DEPARTMENT AND THE GOVERNOR,
3, ADVISE THE GOVERNOR, THE LEGISLATURE AND ALL CONCERNED STATE AND
LOCAL AGENCIES ON ISSUES AFFECTING INDIVIDUALS WITH DEVELOPMENTAL
DISABILITIES AND THEIR FAMILIES.
4. DIRECT C W U I N T S BY CONSHERS OF FMILY SUPPORT SERVICES TO THE
PROPER AGENCIES FOR RESOLUTIO)(, REVIEH ACTIONS TO RESOLVE THESE COMPLAINTS
AND TAKE ACTION TO ENFORCE A RESOLUTION OF CmPLAINTS I F NECESSARY.
H. THE DIVISION SHALL ANNUALLY EVALUATE THE FAHILY SUPPORT PROGRAM
AND SUBNIT A WRITFEW REPORT TO THE GOVERNOR, THE SPEAKER OF THE HOUSE OF
REPRESEKTATIVS AND THE PRESIDENT OF THE SENATE THAT CONTAINS THE
FOLLOW I NG :
1. INFORMTION ON THE IMPACT OF THE F M I L Y UPPORT PROGRAM ON
FAMILIES Mi0 PARTICIPATE AS WELL AS THOSE m0 DO NOT PARTICIPATE OR WftO
PARTICIPATED BEFORE BECOC1ING INELIGIBLE.
2. 3A)IPI.E ASSESSMENTS OF FAMILIES RECEIVING F M I L Y SUPPORT
SERVICES, INCLUDIWG ASSESSUENTS OF THE ADEQUACY OF THE SERVICES, THE
CONSUllER SATISFACTION WITH THOSE SERVICES AND THE FISCAL AND P R O G W T I C
IMPACT OF ADD Iff i SERVICES NOT CURRENTLY AVAILABLE.
3. STATInICS OCI THE ACTUAL NUBER OF APPEALS, THE OUTCOME OF THOSE
APPEALS AWD CHASES I N THE P R S M MADE AS A RESULT OF THE APPEALS.
4. A SIMARY OF EVALUATION REPORTS SUBMITTED ANNUALLY BY ALL
DESIWTED REGIOllAL AHD WCAl A6ENCIES.
5. INFOMATIOW OW EFFORTS TO REACH FAnILIES WHO M Y BE ELIGIBLE FOR
THE F M I L Y SUPPORT PRERM.
6. IMFOWllATION ON ANY INDIVIDUALS DISCHARGED FROM INSTITUTIONS THAT
CAM BE AlTRIBUTED TO THE ALTERNATIVE SERVICES OFFERED BY THE FMILY
SUPPORT PROGIWI.
7. IHFOR)3ATION OW PROGW TO PREVENT FURTHER DISABILITY OR TO
WELIORATE THE IHPACT OF DISABILITIES ON F M I L I E S THAT CAN BE AllRIBW'ED
TO THE FAMILY SUPPORT PROGRAM.
8. INFOR4ATION ON EFFORTS TO DEVELOP NEW COWUNITY BASED SE2VICES
FOR FAMILIES.
9. RECOMENDATIONS FOR ADDITIONAL P R O G W AND SERVICES TO FURTHER
SERVE FAMILIES.
10. STEPS TAKEN BY M E FAMILY SUPPORT PROGRAM TO INCREASE
COORDINATION WITH OTHER AGENCIES.
11. ADMINISTRATIVE COSTS ASSOCIATED WITH THE FAMILY SUPPORT PROGUM.
36-596.53. Payor of last resort
A. THE DIVISION AND ALL DISTRICTS AND LOCAL AGENCIES THAT OPEWTE
FAMILY SUPPORT PROGRAMS OR ADMINISTER PROGRAMS AUTHORIZED UNDER THE SOCIAL
SECURITY ACT SHALL ASSIST FAMILIES IN OBTAINING AND ENSURING FAMILIES USE
ALL AVAILABLE SOURCES OF MONIES BEFORE USING FAMILY SUPPORT SUBSIDIES OR
FAMILY SUPPORT VOUCHER MONIES.
B. THE DIVISION MAY USE MONIES APPROPRIATED TO THE DIVISION FOR
FAMILY SUPPORT SERVICES IF THIS IS NECESSARY TO PREVENT A DELAY IN THE
TIMELY PROVISION OF SERVICES TO AN ELIGIBLE PERSON OR M E PERSON'S FAMILY.
THE DIVISION SHALL SEEK WHENEVER POSSIBLE TO OBTAIN REIMBURSEMENT FOR
MONIES EXPENDED FOR M I S PURPOSE FROM THE AGENCY OR ENTITY THAT HAS THE
ULTIMATE RESPONSIBILIN FOR. PAYMENT.
C. THE DIVISION MAY APPLY FOR AND RECEIVE FEDEML GRANTS, MATCHING
MONIES AND PRIVATE GRANTS TO HELP FUND FAMILY SUPPORT SERVICES.
36-596.54. Family suooort vouchers and subsi di es
A. THE DIVISION MAY PROVIDE FAMILY SUPPORT VOUCHERS FOR SERVICES
PROVIDED PURSUANT TO CHAPTER 29, ARTICLE 2 OF MIS TITLE IF THOSE SERVICES
ARE PROVIDED BY CERTIFIED PROVIDERS, ARE INCLUDED IN THE INDIVIDUAL
PROGRAM PLAN AND ARE APPROVED FOR TITLE XIX FUNDING. M E DIVISION BY RULE
SHALL PRESCRIBE CERTIFICATION STANDARDS, THESE CERTIFICATION STANDARDS
SHALL BE APPROVED BY M E DIRECTOR OF M E ARIZONA HEALTH CARE COST
CONTAINMENT SYSTEM PURSUANT TO CHAPTER 29, ARTICLE 2 OF M I S TITLE.
B. THE DIVISION MAY PROVIDE A FAMILY SUPPORT VOUCHER SYSTEM WITH
DIFFERENT ELIGIBILITY GUIDELINES AND SERVICE COVERAGE FROM THE VOUCHERS
WHICH MAY BE OFFERED PURSUANT TO SUBSECTION A.
C. A FAMILY MAY DECIDE HOW TO USE A FAMILY SUPPORT SUBSIDY IF THE
USE IS CONSISTENT WITH ME INDIVIDUAL PROGRAM PLAN AND THE FAMILY SUPPORT
SUBSIDY PROGRAM GUIDELINES.
D. FAMILY SUPPORT PAYMENTS ARE NOT TRANSFERABLE AND ARE NOT SUBJECT
TO SALE OR EARNISHMENT.
36-596.55. Cwmunity based servfces
A. THE FAMILY SUPPORT PROGRAM MAY ASSIST WITH OTHER C O M U N I M BASED
RESOURCES IN DEVELOPING COWUNITY BASED SERVICES BY ESTABLISHING A PROGRAM
OF GRANTS TO DISTRICTS AND LOCAL AGENCIES AND PROVIDES, BOTH PUBLIC AND
PRIVATE, AND TO CONSWER GROUPS TO ESTABLISH OR DEVELOP FAMILY SUPPORT
SERVICES. THE FAMILY SUPPORT PROGRAM MAY ALSO COMRACT DIRECTLY WITH
PUBLIC AND PRIVATE PROVIDERS AND CONSUMER GROUPS TO ESTABLISH C O m U N I M
BASED SERVICES PROGRAMS IF THEY ARE NOT READILY AVAILABLE.
8. THE FAMILY SUPPORT PROGRAM MAY PROVIDE TECHNICAL ASSISTANCE TO
PUBLIC AND PRIVATE AGENCIES AND TO CONSUMER GROUPS THAT ARE DEVELOPING OR
OFFERING FAMILY SUPPORT SERVICES.
36-596.56. El iqibility
A. A PERSON WHO IS ELIGIBLE FOR SERVICES PURSUANT TO SECTION 36-559
IS ALSO ELIGIBLE TO RECEIVE SERVICES UNDER THIS ARTICLE IF THAT PERSON IS
RECOWENDED TO RECEIVE SERVICES UNDER THE INOIVIDUAL PROGRAM PLAN. A
PERSON SHALL ALSO MEET ANY APPLICABLE ELIGIB I LIN REQUIREMENTS OR
GUIDELINES IN ORDER TO RECEIVE FAMILY SUPPORT SERVICES FUNDED IN WHOLE OR
IN PART WITH FEDERAL MONIES.
B. THE DIVISION SHALL REVIEW THE PLAN TO DETERMINE IF THE PERSON IS
ELIGIBLE FOR SERVICES AND IF HONIES ARE AVAILABLE, THIS REVIEW SHALL TAKE
PLACE AT THE DISTRICT LEVEL,
C. TO BE ELIGIBLE FOR SERVICES, A FAMILY SHALL:
1. EXPRESS AND DEMONSTRATE A WILLINGNESS TO KEEP THE DISABLED
FAMILY MEMBER AT HW OR IN THE C W U N I M .
2. AGREE TO COOPERATE WITH THE PROVIDERS OF SERVICES IN DEVELOPING,
IMPLEMENTING AND EVALUATING THE FAMILY SUPPORT SERVICES THAT ARE PART OF
THE INDIVIDUAL PROGRAM PLAN,
3, DEMONSTRATE A NEED FOR SERVICES.
4, UNDERGO AN EVALUATION BY THE DIVISION OF THE FAMILY'S FINANCIAL
RESOURCES INCLUDING MONIES FROM OTHER STATE AND FEDERAL PROGRAMS THAT ARE
AVAILABLE TO THE FAMILY.
5, COMPLY WITH OTHER FACTORS THE DIVISION DETERMINES ARE NECESSARY
FOR ELIGIBILIM.
D, M E INDIVIDUAL PROGRAM P U N TEAM SHALL DETERMINE WHAT SERVICES
SHALL BE PROVIDED TO AN INDIVIDUAL WITH A DEVELOPMENTAL DISABILITY OR A
FAMILY ON BEHALF OF A FAMILY MEMBER WITH A DEVELOPMENTAL DISABILITY AND
WHICH SHALL BE SPECIFIED IN THE PLAN ITSELF. THE CASE MANAGER SHALL
COORDINATE THE PLAN. M E PIAN SHALL INCLUDE THE FOLLOWING:
1 A FINDING OF M E FAMILY'S NEED FOR SERVICES AND AN INDICATION OF
THE FAMILY'S STRENGTHS AND RESOURCES THAT THE PLAN MAY SUPPLEMENT OR
SUPPORT TO MEET THE FAMILY'S NEEDS,
2. NOTICE OF THE SPECIFIC PROGRAMS, SUBSIDIES AND SERVICES FOR
WHICH THE FWILY IS ELIGIBLE,
3. A CLEAR EXPLANATION OF THE WAY IN WHICH THE PROGRAMS, SUBSIDIES
AND SERVICES SHALL BE PROVIDED.
4. A STATEMENT OF THE SPECIFIC GOALS OF THE PLAN AND M E METHODS TO
BE USED TO ACHIEVE THESE GOALS.
5, A TIMETABLE FOR ACHIEVING GOALS.
6. NOTICE OF THE ANNUAL DETERMINATION OF CONTINUED ELIGIBILITY AND
OF REPORTABLE EVENTS THAT WILL TRI66ER AN EARLIER ELIGIBILITY
ORETWINATION,
E, TO ENSURE CONTINUE0 ELIGIBILITY, A FAMILY SHALL PROMPTLY REPORT
ANY CHANGES IN THE FAMILY, THE NEED FOR SERVICES, INCOME AND ALL OTHER
CIRCLMTANCES THAT RELATE TO ELIGIBILITY~
F, THE INOIVIDUAL PROC;RAM PLAN fEAn SHALL ANNUALLY REVIEW THE
ELI6IBILITY OF EACH FAnILY OR INDIVIDUAL IN THE FAMILY SUPPORT PROGRAM.
THIS REVIEW % A L L INCLUDE:
1. AN EL16SBSLIN REVIEW OF M E WEEDS OF THE FAMILY OR THE
INDIVIDUAL.
2. A REPORT PREPARED BY THE FAMILY AND THE CASE MANAGER ON WHETHER
THE NEEDS AND GOALS OF THE INDIVI9UAL PROGRAM PLAN ARE BEINS MET,
3. A REPORT OF THE CIRCUMSTANCES THAT MIGHT TRIGGER AN EARLIER
REVIEW OF ELIGIBILITY,
4. A REVIEW OF THE FAMILY'S FINANCIAL RESOURCES.
6. A FAMILY MAY REQUEST A REVIEW DESCRIBED IN SUBSECTION F OF THIS
SECTION AT ANY TIME.
36-596.57. Admission: legi sl ative appropriation;
ADMISSION INTO= ANYY D VE LOPMENTAL DISABILITIES FAMILY SUPPORT PROGRAM
OR SERVICE WHICH IS OPERATED OR SUPPORTED BY THE DEPARTMENT SHALL BE
SUBJECT TO M E AVAILABILITV OF SPACE IN THE PROGRAM OR SERVICE AND SHALL
BE SUBJECT TO LEGISLATIVE APPROPRIATION AND OTHER AVAILABLE FUNDING UNLESS
ADMISSION OR COVERAGE IS REQUIRED PURSUANT TO CHAPTER 29, ARTICLE 2 OF
THIS TITLE.
Sec. 2. Continuation of the Arizona lonq-term care system
The division of developmental disabilities in the department of
economic security, the Arizona health care cost containment system
admini stration and the governor' s counci 1 on developmental di sabi 1 i ties
shall cooperate to seek the permanent continuation of the Arizona
lonu-- term care system. Set. 3. Family support voucher; federal approval
The division of develomntal disabilities in the deoartment of . - . . - -
economic security and the' Arizona health care cost contaiknt system
shall continue to work together to obtain approval from the federal
governnent for a family support voucher system which would use matching
monies provided pursuant to title XIX of the social security act for
vouchers to be used by persons eligible to receive services pursuant to
tltle 36, chapter 29, article 2, Arizona Revised Statutes, to purchase
some or all of those services directly from certified providers.
6.2. Family Support Work Group Membership
Bill Allaire (Parent) Patty Alvarado (DDD)
President Acting District Program Manager
Pilot Parents of Southern Arizona DDD District I11
6820 N. Amah1 220 N. Leroux St
Tucson AZ 85704 Flagstaff AZ 86001
Phone 297-0310 Phone 779-2731, FAX 779-6095
Ron Barber (Chairperson) (DDD) Holly Bohling (Provider)
District Program Administrator President, Creative Networks
DDD District I1 3420 N. Shea Blvd., Suite #I 15
P.O. Box 13178 Phoenix AZ 85028
Tucson AZ 85732 Phone 494-1234, FAX 494-9378
Phone 628-6800, FAX 628-6809
Cindy Butler (Parent) Julie Brown (Parent)
3420 E. Gold Dust Ave. 4712 N. 54th Drive
Phoenix AZ 85028 Phoenix A2 85031
Phone 494-7529 Phone 848-9713
Rick Cannata, Jr. (SiblingIGCDD) John Corcoran (DDD)
Chairperson, Governor's Council Area Program Manager
on Developmental Disabilities DDD District IV
7373 N. Scottsdale Rd., #130C 232 London Bridge Road
Scottsdale AZ 85253 Lake Havasu AZ 86403
Phone 95 1-2653 Phone 453-7171, FAX 680-1882
Julie Decker (Parent) Ken Doss (ProviderDDAC)
478 Cheyenne Lane P.O. Box 11572
Lake Havazu AZ 86403 Tucson AZ 85734
Phone 353-3820 Phone 648-0959
Jamey Gittings (ProviderParent) Andy Gomm (DDD)
Executive Director Case Management
Project Origins DDD District I11
382 S. Convent P.O. Box 21508
Tucson AZ 85701 Chinle AZ 86503
Phone 882-5703 Phone 674-8325, FAX 674-5494
Becky Hamblin (Parent)
P.O. Box 1015
Eagar AZ 85925
Phone 333-4230
Bob Harmon (DDD)
Administrator, Program
Operations
DDD Central Office
1789 W. Jefferson, SITE 791A
Phoenix AZ 85007
Phone 542-04 19, FAX 542-6870
Barbara Jones (Parent)
4770 N. 7th St., #J-229
Phoenix AZ 85014
Phone 277-1069
John Millard (DDD)
Early Education Coordinator
DDD District I, SITE 161F
11225 N. 28th Dr., Suite C-207
Phone 375-1403, FAX 993-1250
David McCasland (Parent)
2334 E. Dragoon Ave.
Mesa AZ 85204
Phone 371-6006
Kim Rispoli (Advocate)
Executive Director
Maricopa Advisory Council
3333 E. Camelback Road, Suite
185
Phoenix AZ 85018
Phone 381-1595
Melinda Harger (DDD)
Case Management Supervisor
DDD District 111
40 S. 11th Street
Show Low AZ 85901
Phone 537-71 18, FAX 537-8500
Sheila Hill (Parent)
5340 E. Broadway Blvd
Tucson AZ 857 1 1
Phone 745-4545
Kathy Kelly (Provider)
Human Resources Supervisor
Tempe Center for Habilitation
214 N. Dodge
Tempe AZ 85283
Phone 838-81 11 Ext 106, FAX
730-4150
Marianna Moore (DDD)
Area Program Manager
DDD District I, SITE 868F2
4747 N. 7th St., Suite 110
Phoenix AZ 85014
Phone 248-8801, FAX 248-8944
Tyrone Peterson (DDD)
Case Management Supervisor
DDD District I1
P.O. Box 13178
Tucson AZ 85732-3178
Phone 745-5588, FAX 571-8871
Jannah Scott (DHS)
Planning~EvaluationT eam Leader
OCSHCN, AZ Dept of Health
Services
41 1 N. 24th Street
Phoenix AZ 85008
Phone 220-6525, FAX 220-6551
Deb Shrader (DDD)
Area Program Manager
DDD District V
P.O. Box 1467
Coolidge AZ 85228
Phone 723-4151, FAX 723-7618
Mary Slaughter
(AdvocateJProvider)
Executive Director
Pilot Parents Partnerships
2150 E. Highland Ave., #I05
Phoenix AZ 85016
Phone 468-3001
Karen Van Epps (SiblingIArc)
Chair, Residential Services
Committee
The Arc
521 W. Kaler Drive
Phoenix AZ 85021
Phone 997-2368
RESOURCE STAFF
Committee on Rules
Eileen Colleran
Administrative Coordinator
DDD Central Office
1789 W. Jefferson, SITE 791A
Phoenix AZ 85007
Phone 542-0419, FAX 542-6870
Committee on
Planning and Evaluation
Mary Ellen Maldonado
Legislative Liaison
DDD Central Office
1789 W. Jefferson, SITE 791A
Phoenix AZ 85007
Phone 542-0419, FAX 542-6879
Cheryl Skalsky (Advocate)
Executive Director
Pima Council on DD
P.O. Box 77133
Tucson AZ 85703
Phone 622-7383, FAX 797-8402
Paula Stefani (Provider)
Creative Networks
P.O. Box 3023
Flagstaff AZ 86003
Phone 556-0195
Committee on Budget
John Villegas-Grubbs
Finance Manager
DDD Central Office
1789 W. Jefferson, SITE 791A
Phoenix AZ 85007
Phone 542-0419, FAX 542-6870
Committee on
Eligibility/Legislation/Training
Connie Sheets
Case Management Coordinator
DDD Central Office
1789 W. Jefferson, SITE 791A
Phoenix AZ 85007
Phone 542-04 19, FAX 542-6870
Resource Consultant:
Joe Patterson, Ph.D.
3211 W. Westwood Place
Tucson AZ 85745
Phone 743-9552
6.3. Family Support Work Group Committee Structure
STEERING COMMITTEE
Ron Barber, Chairperson
Bill Allaire
Patty Alvarado
Rick Cannata
Ken Doss
Kathy Kelly
Mary Slaughter
Karen Van Epps
COMMITTEE ON RULES
Bill Allaire, Chairperson
Cindy Butler
Rick Cannata
Melinda Harger
Bob Harmon
Fred Meister
John Millard
Kim Rispoli
Deb Schrader
Resource Staff: Eileen Colleran
COMMITTEE ON BUDGET
Mary Slaughter, Chairperson
Holly Bohling
Jamey Gittings
Sheila Hill
David McCasland
Resource Staff: John Villegas-Grubbs
COMMITTEE ON FAMILY SUPPORT PLAN
Patty Alvarado, Chairperson
Julie Decker
Andy Gomm
Barbara Jones
Tyrone Peterson
Jannah Scott
Cheryl Skalsky
Resource Staff: Mary Ellen Maldonado
COMMITTEE ON ELIGIBILITY/LEGISLATION~TRAINING
Kathy Kelly, Chairperson
Julie Brown
John Corcoran
Ken Doss
Becky Hamblin
Paula Stefani
Karen Van Epps
Resource Staff: Connie Sheets
Resource Consultant: Joe Patterson, Ph.D.
6.4. Family Support Councils
A concept paper for discussion by the Family Support Work Group
Pumses for havin-e Family Suvwrt Councils as Described bv Other States
To promote leadership by families in policy development, implementation and
evaluation of family support services, and parent/professional partnerships.
To promote and develop interagency coordination and collaboration
To promote meaningful participation by families in all aspects of the statewide
system of family support.
To cause a systems change so that everyone (community as well as public
systems) supports families.
To create parent/professional partnerships to facilitate the development and
utilization of generic community resources, networking for individuals (with
developmental disabilities, other issues), outreach to more parents, and the
development of friends and natural supports.
To facilitate community memberships and presence for persons with
developmental disabilities.
To advance family empowerment in the decision-making process.
To encourage local control of the service system by the community, family, and
individuals.
Additional comments from sources in other states:
All sources stressed that Family Support Council must have a single purpose so as
to not compete with other priorities, agencies, or services, funding sources.
Parents and professionals must have ongoing training (e.g., technical issues,
political issues, systems issues, etc.).
The Family Support Council should accept the responsibility of addressing various
barriers and accessing resources wherever they may be identified (legislation,
systems change, etc.).
In provider-driven states, it is important for families to have a balance of power
via Family Support Councils.
Procedures for Avpointment of Members in Other States
In most states, although the phrase "hand-picked" was used, the chief executive of
the DD ofice would pick the membership from recommendations from local
groups, governor's councils, etc. and these were "rubber stamped" by the
executive.
After the first group was established, future members are chosen by the council.
Terms of members are staggered with no one serving more than 3 years.
Local councils appoint members to serve on the state councils.
Members have equal power on councils.
Existing Responsibilities, Functions, Roles, Duties. Breadth of Authoring, and
Funding
Write the family support plan
Provide a vehicle to surface concerns or grievances as well as positive advice.
Monitor implementation of the family support plan or services and provide
feedback to local administration.
Produce an annual report on family support activities.
Members are volunteers but can be reimbursed for expenses and costs incurred
(travel, respite, etc.).
Adopt, review, revise the family support plan which follows the mission, values,
philosophy, principles, and goals of the family support legislation.
Assess needs, establish priorities, set goals for family support in the local region.
Provide outreach to families to broaden involvement in Family Support and
receipt of service.
Coordinate efforts by private and public agencies which include, but are not
limited to, identification of services to avoid duplication and gaps. Insure services
are available for those who need them.
Advise the area agency (e.g., district) in development of regional family support
plans, monitor services provided pursuant to plan.
Authority for review andfor approval of local funding decisions.
Composition of Familv Support Councils in Other States
Family members only on local councils in most source states.
- 54 -
Family members and individuals with disabilities are members of local councils in
some states.
Three states include a majority (60% to 80%) of family members with others
being community representatives, case managers, and providers.
All sources noted that the Family Support Council had to reflect the multi-cultural
and ethnic representation of the community. Families represent members with
different disabilities.
Average size of councils is 11 with range from 5 to 12.
One state had 2 planning councils in each region because of size of region.
At least one council for each service agency (e.g., DDD District).
Many states have chosen to have one person fill a role as coordinator, agent, or
advocate. Some states have this person at the state level in one of the DD
Division's departments. Many states also have this position in each of the local
councils. Some states fund the state position with a regular FI'E rather than use
family support funding for the position. Most councils have elected to have a
coordinator at the local level with funding as part of the family support allocation
or through funding from the local DD region or district. This coordinator may be
housed in the state office although they are chosen by the council and may be
dismissed by the council. The coordinator meets with the council on a regular
basis, reports to the council, serves as community resource to help council to
fulfill the mandates from the legislation, deals with emergencies, addresses one-time
needs, accesses generic community resources, builds resources, enhances
community presence for members with disabilities, etc.
Pros and Cons for Familv Su~porCt ouncils in Arizona
Pro Con
Pending federal legislation will make Lack of clarity about the difference
funding available for states that between Family Support Council and
implement family support councils other family advocacy/involvement
groups (e.g. advisory councils)
The single focus on family unifies Potential for perceived competition,
many constituencies. Better able to loss of special or categorical focus (e.g.
integrate currently factionalized DD versus all families).
service systems, governmental
agencies, etc. Potential for stronger
united voice around family support.
Increased power and leadership for There is no current statutory
systems change for whole community authorization for Family Support
support rather than systems based Councils.
support.
Improved outcomes for individuals There is no funding available to staff
and families. Family Support Councils
Families can drive the system Confidentiality and conflict of interest
through choice, balance the system issues will be surfaced.
(prevent provider-driven or agency-driven
services)
Sources for this Information
Fran Smith, HSRI Partners for Policy trainer
New Jersey Family Support.Legislation
Marilyn Brown, Utah Family Support Coordinator
Scott Miller, West Virginia Family Support Coordinator
South Dakota Family Support Legislation
A1 Robeauchaud, New Hampshire Family Support Coordinator
Val Bradley, Human Service Research Institute
Katherine White, Oregon Family Support Coordinator
Renee Avant, Florida Family Support Coordinator
Colorado Family Support Coordinator
Cery Melda, HSRI Family Support Network in Massachusetts.
Summary of Workgroup Discussion on Family Support Councils
As with many forums before, the workgroup struggled with the concept of Family
Support Councils (FSC's). Most of the problem centered on finding an appropriate
role for the councils in Arizona, particularly since there are many such entities
already. Overall, the sense of the workgroup is troubled, since we seem to be looking
for a reason to do this, rather than having this concept arise out of a natural need.
There is some feeling that this need may become more apparent as time progresses.
Some things were identified as good candidates for functions that FSC's could
provide:
They could establish priorities and set goals at a local level
They could facilitate the creation and nurturing of the natural or community based
supports which should be a part of any system.
They could provide a forum for grievances (though procedures already exist)
They would probably become part of a support system for families in the area
They could participate in the overall Division planning process for Family Support
There was also some feeling that if FSC's did not have some funding that they could
control, they would be much less effective. A liberal reading of the bill indicates that
funneling some funds for items such as the development of community supports
would be possible (e.g. town A needs equipment for challenger little league; town B
needs toys for a lending center). It may also be possible to use FSC's as the approval
mechanism for what are now ATF funds in place of the DPM. Overall though, it was
felt that most such requests should be routinely approved within established
guidelines, and that the FSC would only become involved when judgment outside the
guidelines was called for.
Some mechanical issues came up. One was the difficulty of starting and maintaining a
large group of local organizations over time without creating a large bureaucracy.
Since there is a strong desire that most of the participants be parents, it would be
more difficult than maintaining the councils that have high membership from the
professional and provider communities and whose time and expenses are part of the
job. This is another argument for some funding being available.
Consistency of some functions was also a concern; it is important that a request that is
approved in one part of the state be likely to be approved in another. One possible
mechanism might be a "chartering" process, like that used by the statewide Pilot
Parent organizations.
In summary, while roles can be imagined for this entity, the workgroup did not see a
clear and present need for this function at this time. It did agree that the need may
arise as the system "defines" itself.
TITLE 6. ECONOMIC SECURITY
CHAeTBR 6. DEPARTMENT OI ICONOMIC SECURITY
DEVHX)P)(ENTAL DISABILITIES
ARTI- 1. O mPROV ISIONS
R6-6-101, Definitions
R6-6-102. Rights of individuals with developmental disabilities
R6-6-103. Confidentiality officer
R6-6-104. Access to personally identifiable information
R6-6-105. Consent for release of information
R6-6-106. Violations and penalties
R6-6-107. Least restrictive environment
R6-6-108. Safe and humane environment
ARTICLg 2. LICWSURE OF COWdUNITY RESIDENTIAL SETTINGS FOR INDIVIDUALS
WITS DINELOP-AL DISABILITIES
R6-6-201. Application process
R6-6-202. Inspections
R6-6-203. Maintenance of license
R6-6-204. Waiver
R6-6-205. Types of licenses
R6-6-206. Monitoring
R6-6-207, Denial, suspension, revocation
R6-6-208. Rights of clients
R6-6-209. Group settings and group homes
R6-6-210. Medications in group settings and group homes
R6-6-211. Safety requirements in group settings and group homeo
R6-6-212. Adult and child developmental homes
R6-6-213. Responsibilities of developmental home parents
R6-6-214. Training requirements for developmental home parents
R6-6-215. Safety requirements of developmental homes
R6-6-216. Child developmental foster homes
R6-6-217. Certification of Administration for Children, Youth and
I Families foster home8
R6-6-218. Adult developmental homes
R6-6-219, Complaints
R6-6-220. Appeals
*POSSIBLE CHANGES IN FUTURE, BASED ON PLAN ESTABLISHED.
-1- 3. ~IOIBILITI m R D-P- DISABXLITILIS SERVICES
R6-6-301. Sligibility for servicem
R6-6-302. Guideline. for determining developmental disabilities
R6-6-303. pamilv Suo~ort Services Eliaibilitv
R6-6-3033. Eligibility Review
ARTIQtlC 4. APPLICATIOU
R6-6-401. Application for admission to services
R6-6-402. Consent
R6-6-403. Referrals from Juvenile Court
R6-6-404, Eligibility under ALTCS
R6-6-405. Documentation and verification
A R T I 5~. ADIIISSION/RED~TEEUIINATION/TERWXNATION
R6-6-501. Admission
R6-6-502. Emergency admioeion to services
R6-6-503. Redeterminations
R6-6-504. Termination of mervices
R6-6-505. Continuation of services
-1- 6. PROaRAW SERVICES
R6-6-601. Case management
P6-6-602. The Individual Service and Prouram Plan IISPP) Team
R6-6-6053. Individual Service and Program Plan IISPPL
R6-6-6033. Assignment to services
R6-6-6041. Periodic evaluation8
R6-6-6056. Transfer to another aervice or changes in services
R6-6-6061. Consent of the responsible person
ARTICLE 7. FAMILY SUPPORT
p6-6-701. Pamilv SUDDO* Plaq
R6-6-702. Eliaibilitv
R6-6-703. Eliaibilitv Review
AR9lehB-8r-VBi)
ARTICLE 8. Provider Certification Standards
lULNAGINO INAPPROPRIATE BEHAVIORS
Applicability
Prohibitions
Program review committee (PRC)
ISPP team responsibilities
Monitoring behavior treatment plans
Training
Sanctions
Emergency measures
Behavior modifying medications
-1- 12. CONTRIBUTIO# ?OR CARE
R6-6-1201. Contribution towardm cost of c u e for residential services
R6-6-1202, Determination of contribution unount towardm the coat of
care for remidential mervices from a clientlm parent.
R6-6-1203. Determination of contribution amount towardm the cost of
care for residential service8 from a client1. apaume and/or
estate
R6-6-1204. Ume of the Economic Ability Schedule
R6-6-1205. Determination of contribution from individual clients for
remidential service8
R6-6-1206. Billing
Appendix A Economic Ability Schedule
ARTI- 13. COORDINATION OF -TITS; THIRD PARTY LIABILITY
R6-6-1301. Information required at initial application and
rodeterminat ion
R6-6-1302. A88ignmtant of right8 to benefits
R6-6-1303. Collections of health insurance
R6-6-1304. Monitoring and compliance
R6-6-1305. Notification of lien.
ARTI- 14. GUARDIANSHIP AND CONSISRVATORSEIP
R6-6-1401. Guardianship
ARTICLB 15. REPEALED
-1- 16. ABUSE AND XEGLECT
R6-6-1601. Reporting procedure8
R6-6-1602. Investigation
R6-6-1603. Medical evaluation
ARTI- 17. HUWAW RIGHTS COWITTEES
R6-6-1701. Establishment of committees
R6-6-1702. Membership
R6-6-1703. Procedure
R6-6-1704. Committee responsibilities
R6-6-1705. Staff
R6-6-1706. Access to records
ARTI- 18. ADWINISTRATI~ IUIVIEW
R6-6-1801. Right to review: Notice
R6-6-1802. General procedures
R6-6-1803. Procedures for grievances related to licenses
R6-6-1804. Procedures for grievances by DD/ALTCS clients and ALTCS
service providers
R6-6-1805. Appeals and hearings
ARTI- 20. A P P W M D -1NGS
R6-6-2001. Right to appeal
R6-6-2002. Filing an appeal
R6-6-2003. Service on parties
R6-6-2004. Time
R6-6-2005. Rapresentation of parties
R6-6-2006. Continuation of services
R6-6-2007. Scheduling and notice of hearing
R6-6-2008. Change of heufng officer
R6-6-2009. Failure of 8 party to appear
R6-6-2010. Preheating summary
R6-6-2011. Subpoena of witnesses and documents
R6-6-2012. Conduct of hearing
R6-6-2013. Bearing decision
R6-6-2014, Termination of appeal
R6-6-2015. Review by the Appeals Board
R6-6-2016. Review by AHCCCS of ALTCS-related matters
ARTI- 1. GISNERAL PROVISIONS
R6-6-101 Def iaitions
In addition to the definitions found in A.R.S. S36-551, the following
definitions apply to this Chapter.
1. No change
2. No change
3. No change
4. No change
5. No change
6. No change
7. No change
8. No change
9. No change
10. No change
11. No change
12. No change
~ 3 r - - ~ ~ ~ - . M ~ - m e e n e - ~ - A u s i s t a n t - - P ~ r - 8 i + i s i ~ ~
Beve~epmente%-Bimabi%itiaeT-BepaItme~t-e~-3eenemie-~eeu~~ty~
142. No change
153. No change
162. No change
136. No change
181. No change
198. No change
29. mDevelomental Disabilities Advisotv Councilm or ODDACm means the
council formed Dureuant to A.R.S. S36-553.
30r--LBb&rwb---the-- . . L b - ~ i r i ~ ~ - i n - ~ - e - f - - H s a
P e p a r t m e n t ~ e - - e i x - - p % a n n i n g - - d i ~ t r F e t 8 - ~ e t ~ ~ i e M - ~ ~ ~ ~ - ~
ArRrS~-s4&-&96&r
3320.N0 change
2?&. No change
231. No change
247--%P-kw-smpperta-m~ns-prsgraracane)-&-toatamh
fmi&y-or-heas&&d--r-m---*-64
p r e m e t e - - C h ~ - r + t u ~ - t ~ - ~ - ~ - ~ - a ~ - - ~ b - deve&epeate%-dimabi&ityr
252. No change
262. No change
233. No change
285. No change
291. NO change
3ea.No change
3 1 a . N o change
32Q. No change
33A. No change
342. No change
353. No change
363. No change
392. "Individual service and program plan team" or "ISPP team" means a
group of pereone gs defined in A.R.S. S36-596.51 who are
aesembled by the Division and coordinated by the client'e case
manager--in--eeslp~ianee-lritk--ArRr8r--f3b55%--elrd-f~568r-~
dcvesep-ah*-hr-aeh-dianh. The reswnsibilities of the
ISPP team to develo~ an ISPP for each client incor~oratee and
ge~laces the resmnsibilities of the la cement evaluation team
as outlined in A . R . S . S36 -560 and of the IPP Team as outlined in
&.R.S. S36.596.56.
385. No change
391. No change
48a.No change
4339.N0 change
40. "Local ~lannina arouDW means a arouD of neo~le identified by
common interest or locale.
42A. No change
432. No change
441. No change
454. No change
462. No change
435. No change
482. No change
498. No change
58e.No change
5aQ. No change
52f. No change
532. No change
541. No change
554. No change
563. No change
535. No change
582. No change
598. No change
6859. No change
639. No change
6Pf. No change
632. No change
642. No change
654. No change
661. No change
R6-6-102. Rights of indiriduals w i t h doroloprontal disabilities.
No change
116-6-103. Confidentiality officor
No change
R6-6-104. Accoss to prsorully identifiable inforution
No change
1 16-6-105. Conseat for roloas. of inforution
A. Consent for the release of personally identifiable information
shall be:
1. Obtained from t h e c l i e n t or responsible person in writing
and dated;
2. Xaintained i n the main record.
B. Consents for Rplease of information obtained during intake shall
expire within 90 days.
C, Subsequent consents s h a l l be obtained as needed and s h a l l be valid
for a period of up t o but not more than six months from .the date
of execution.
R6-6-106. Violations and penalties
No change
116-6-107. m a s t r e s t r i c t i v e onvironrent
No change
R6-6-108. Safe and humane environment
No change
ARTICLE 2. LICeJSURB OF COIO(VN1TY RESIDENTIAL SETTINGS rOR INDIVIDUALS
WITH DEVELOP-AL DISABILITIES
No change u n t i l f i l e d with the Secretary of State
ARTI- 3. ELIGIBILITY ?OR D-PXENTAL DISABILITIES SERVICES
16-6-301. E l i g i b i l i t y for soroices
No change
R6-6-302. Guidelines for dotemining developrental d i s a b i l i t i e s
No change
p6-6-303. lramilr SUDDOS~e~~ ~ i c Be lsi aibilitx
Jn addition t o e l i a i b i l i t v c r i t e r i a established in A.R.S. S36-596.56.
c l i e n t s who are ~ a r t i c i ~ a t i nwait h t h e i r families in a familv s u ~ ~ o r t
plan must meet the e l i a i b i l i t v c r i t e r i a established in ~6-6-703.
R6-6-3034. E l i g i b i l i t y Review
& Detenninatione of e l i g i b i l i t y a r e subject t o review a t any time by
the Assistant Director or designee.
3 The e l i a i b i l i t v of each m i l v or individual i n the familv s u ~ ~ o r t
=oar ~ u a l lrevivewed bv the ISP P tem ~ u r s u atn t o
S, S36 - 59$.56r
ARTI- 4. APPLICATION
ARTICLE 5. A D N I S S I O N / R E D ~ I # A T I O N / ~ I ~ X O N
No change
No change
R6-6-602. Tho ISPP TO-
8 * The ISPP team shall be an interdisci~linarv team whose members
work toaether to devel0D the ISPP for the client or the familv of
the client.
1. The ISPP team shall include the client. the rearmnsible
pereon if other than the client, the case manaaer.
~e~reeentativeosf each service Drovider, and anv additional
persons necessarv to develo~ a com~lete and effective Dlan
gnd a~Dr0ved bv the res~onsible wrson.
2. Unless otherwise indicated bv the res~onsible ~erson. the
case manaaer shall serve as ISPP team facilitator and
soordinator.
8. The ISPP team shall meet:
1. Within 30 davs followina determination of a client's
gliaibilitv to conduct an evaluation to determine the
a ~ ~ r o ~ r i asterev ices for the client and develo~a n initial
JSPP based on the evaluationt
2. Within 30 dave followina a client's assianment to a roara am
gr service to review and modifv the client's initial ISPP,
unless waived bv the Assistant Director or desianee;
3. As recommended bv the case manaaer durina ~eriodic reviews
pursuant to A.A.C. R6-6-604 and:
a. When there is a sianificant chanae in the client's
~ircumetances:
b. Whenever there is a maior service ~rovider chanae, or
prior to anv transfer from a residential settina: or
c. Whenever an emeraencv measure is used to manaae a
behavior two or more times in a 30 dav Deriod Dursuant
fo A.A.C. R6-6-908.
4. At least annuallv.
P In the case of a DD/ALTCS client, the ISPP team shall ensure that
the client obtains medicallv necessarv services and other
necessarv medicallv related remedial and social services.
E In develo~ina a behavior treatment ~lan. The ISPP team shall work
with the Proaram Review Committee IPRC) and Human Riahts
Committees IHRC) Dursuant to A.A.C. R6-6-903. 904 and 905.
P If the familv is eliaible to ~artici~atuen der familv su~oort. the
JSPP team shall develo~a mlan ~ u r s u ~tot A .R.S. S36-596.56.0.
g.nd.A.A.C. Title 6. Chanter 6. Article 7,
R6-6-6033. Inditidurl Service and Program Plan JISPPl
A r - - - W ~ h - * - d a y r r - & & h i ~ - ~ d o ~ r 4 - & i g i b i & i t y ~ - ~ - E S H
tee-----~~-w-tb-h---appteptiate
m e r r i e m m - ~ - . H n - C i & ~ ~ - ~ - + h a k & - ~ s p t l t - P 8 P P - ~ o ~ - t h e
8ve&ratien+
B. Th8 ISPP Ceam shall reeeapsrrnd-epeifie-mewieem pp based upon:
1 Th8 b8.t interests of the client and factor. listed in
A.R.S. S36-560(H);
*?~---9he-peteatiaf-fe1-i~ai&y-muppertt-and
2. The extent to which the rervices:
g g Can be provided in the least obtru~ive manner;
. Provide uninterrupted and orderly tranmition from one
stage of developent t o another based upon c l i e n t and
family age.;
is. Alleviate abuse or .neglect or eliminate conditions
t h a t hinder the c l i e n t ' . developent;
jp. Prevent the c l i e n t from being a danger t o himself or
t o others; and
ks. Support a c l i e n t or family who is experiencing a
temporary but remedial c r i o i a i n ~ l u d i n g
hospitalization, l o s s of a job, incapacitating
illneom, or death.
3. Identified familv s u ~ ~ 0 rntee d6 ~ u r s u a n t t o A.R.S. S36-
396.52 and A.A.C. T i t l e 6# Chepter 6. Article 7 and t h e
sxtent t o which the services:
-----3r---*--te-oh*-*--
a. Promote family campetenco and independence;
b. Preoerve tho i n t e g r i t y of the family;
c. Maximize the c l i e n t ' s independent living;
d. Involve the family i n problem-solving and decision
making ;
e. Meet the needs and desirem of the family; and
f. Prevent the deterioration of the family structure and
functioning md improvo the quality of l i f e f o r t h e
c l i e n t and family;
- - - - - + r - - - - % * ~ b i + * ~ ~ & ~ r ~ - H W ~ & & & ~ ~
tkat--tbe--e&ient--ebtai:n~--mediea&hy--neeessa~y--end--ether
neeesmary-mediea&&y-~eLated-t~edia&-and-meei~~-serv~ees~
C. The ISPP s h a l l contain an asseosment addressing each consideration
l i s t e d in A.A.C. R6-6-603(B) andr
1, The service needs of t h e c l i e n t , both d i r e c t and i n d i r e c t ,
irrempective of the Division's remource a v a i l a b i l i t y ;
2. Individual h a b i l i t a t i o n goal. and objectives, both long-term
and short-term;
3. Methods or strategiem by which objective. mhall be
implemented;
4. Tho financial contributionm, i f any, which the Department
s h a l l require the reoponsiblo permon t o make on behalf of
tho c l i e n t pursuant t o A.R.S. S36-562 e t 8.9. and A.A.C. R6-
6-1201 m t 809.; and
5. Any mpmcial conriderationm.
P The ISPP shall be reviewed bv the case manauer a t l e a s t e v e n s i x
00 d b
R6-6-604. Periodic h a l u 8 t i o n s
lo chango
R6-6-605. Trursfor t o mother serrice o r chmges in s o l l i c e .
90 change
R6-6-606. Consent of tho rosponriblo parson.
No change
/Article 7 is beina used bv licensina-thev will re~eal Article 2 so we
will Drobablv use that.1
WTICLE 7 . FAMILY SUPPORT
J49 reaired bv A*R*S* S36 596.2. the di - vision ohall develo~ a family
s u ~ w r t~ l a nwh ich includes:
A. a needs assesement from information collected bv local
plannina arouDs which ~rioritizes needs and establishes aoals:
8. coordination of familv s u ~ w r ts ervices at three levels,
gtatewide, local and individual;
1. Statewide, the division shall identifv service
gareements between state aaencies, tribal aaencies and local
aovernments that affect the familv s u ~ w r t~ lan. The
division shall coordinate both new and existina services
amona the identified aaenciee.
2. Locallv, the local ~lannina arou~s shall identifv both
local service aareements and needed familv s u ~ ~ o ratmo nq
communitv and local aovernment aaencies that affect service
del iverv .
3. Individuallv, the ISPP teams shall ~rovide
coordination of individual services. Each ISPP team may
provide recormnendatione to their local ~lannina arouD.
C. ~0mDrehenSi~see rvices, resources and ~roaramsf or families
based on information from families and local ~lannina arouns: and
D. the o~wrtunitv for review and comment on the familv s u ~ ~ o r t
plan and services. The division shall Drovide a meaninafuL
o~wrtunitv for local ~lannina arouDs to review and comment on the
familv euDwrt ~ l a nan d services.
A. The division shall ~roduce an annual rewrt evaluatina the family
g u ~ m r tDr oaram. The rewrt shall include all the reuuirements of
J4.R.S. 536-596.521H) and;
1. rewrts submitted from local ~lannina arou~e;
2. recornendations for Lm~rovina service deliverv and Dtovidinq
coordination amona various aaencier: an4
3. activities recruited bv Article 7.
B The Devalounental Disabilities Advirorv Council shall review the
annual remrt of the division and nrovide comments and recoaanendations
fo be included with the submittal of the re~ort to the Govet-
Smaker of the House and PresUent of the Senate*
a- In order to be aliaible for familv e u ~ w r t services, the familv of
fhe client shall:
1. Particbate in the develoment of and amrove an ISPP that:
a. S w c i f i e s t h a t t h e c l i e n t w i l l l i v e i n t h e familv home
p r i n t h e communitv: and
b. Includes an ISPP team aareement wherein t h e family
pareee t o a s s i s t with t h e develounent, im~lementation.
gnd evaluation of familv s u ~ w r tse rvices Dureuant t o
&.R.S. S36-596.56 I C \ :
2. Provide in'fonnation necessarv f o r the Division t o conduct aq
valuation of f i n a n c i a l and other resources a s Drescribed by
&he Division: and
3. Com~lvw ith other reauirements a s ~ r e e c r i b e db v thq
pivision.
B The familv s h a l l remrt anv chanaes i n t h e com~osition of t h e
household. t h e need f o r services, the familv income, and other
circumstances t h a t r e l a t e t o e l i a i b i l i t v under t h i s a r t i c l e t o t h e
fasa manaaer within 30 davs of such chanae.
JZ6-6-704. E l i ~ i b i l i t vR eview
A. To continue e l i a i b i l i t v under familv s u ~ ~ o r tth.e familv s h a l l
f o m ~ l vw ith t h e reauirements of e l i a i b i l i t v ~ u r s u a n tt o A.A.C. R6-
6-703.
B As art of t h e annual review of t h e fSPP. t h e ISPP team s h a l l :
1. Review t h e familv'a continuina e l i a i b i l i t v f o r familv
g u ~ w r tse rvice;
2. Review with t h e familv t h e outcomes of familv s u ~ w r t
g s s i s t a n c e durina t h e ~ r i o vre ar: and
s the en as
r e l a t e d t o t h e a s s i s t a n c e a v a i l a b l e thtouah familv sumort.
C. The ISPP team s h a l l make determination reaardina t h e familvls
continued ~ a r t i c i n a t i o nu nder familv s u ~ w r t .
P. I f t h e familv dieaarees with t h e determination. thev have t h e
g i a h t t o reuuest an administrative review Dursuant t o A r t i c l e 18
of t h i s c h a ~ t e r .
A R T I a 8. RESERVED
ARTICLLI 9. MANAGING IXAPPROPRI- BEHAVIORS
No change
WIaa 12. ~ I B u z I O?lO R CARE
No changa
R6-6-1301. Inforrution roquired at initial a p p l i c a t i o n and
rodotorrip.tion
During the initial application procmss and at mach redetermination for
eligibility, the applicant or shall provide the
Division with information on all health insurance which covers, or is
available to cover, the peraon to receive services including, but not
limited to, the name of the policy holder, the policy holder'e
relationship to the person to receive aervices, social security number
of the policy holder, the name, phone number, and address of the
insurer, the policy number, and extent of insurance coverage.
R6-6-1302. Assignrurt of rights to bonmfits
A. Aa a condition of mligibility, mach applicant ahall asaign to the
Diviaion rights to health insurance payments applicable to the
person to receive services and agree to cooperate with the
Division in obtaining medical support and insurance payments
pursuant to A.R.S. S36-596 pnd S36-596.54.
B. If the responsible person refuses to assign health insurance
benefits to the Division, the Division shall deny or terminate
eligibility for the client.
C. If the policy holder is someone other than the responsible person
and refuses to cooperate with the requirements of this Article,
the Division may deny or terminate eligibility for the client.
R6-6-1303. Collmctiona of health insurance
No change
R6-6-1304. Nonitoring m d complimcm
No change
R6-6-1305. Notification of Limns
No change
ARTICLE 14 GUARDIANSHIP AND CONSERVATORSHIP
No change
ARTIQlZI 16. ABUSE AND IWWCT
No change
R6-6-1801. Right to t.+i.w: lotic.
A. An Administrative Review shall be available to any permon
aggrieved by a decision of the Department. An Administrative
Review is prmliminary to those rights met forth in A.A.C. R6-6-
2001 et aeq.
B. The Departmant shall givm written notice to persons served
directly or indirectly by thm Department informing them of the
right to m AQlinistrativm Review in any decision by a District
Program Manager relating to:
1. Eligibility, admission, placement evaluation and assignment
to services.
2- Eliaibilitv under Familv S u ~ ~ o r t
31. Care and treatment, transfer or substantial change in
services.
34. Termination of, or discharge from, a service.
4. Fee for service.
C. Grievances related to decisions by the program contractor for
licenses or involving DD/ALTCS clients and ALTCS service providers
. are separately addreosed in A.A.C. R6-6-1803 and R6-6-1804
respectively .
D. Written notice shall be in English and, when appropriate and
reasonably possible to do so, in the primary language of the
grievant. When the primary language is not a written language,
ouch notice shall be provided in the language spoken or mode of
communication used by the grievant.
R6-6-1802. General proceduras
No change
R6-6-1803. Procedurms for griev8ncas related to liceasas
No change
R6-6-1804. Procedurms for griavancms by DD/ALTCS 8nd UTCS providers
No change
R6-6-1805. Appeals and hearings
No change
ARTIUB 19. REPEALED
I A P P W AND HEARINGS
No changepp