Power to the People

Power to the People A Summit on Planning for Services Controlled by People with Disabilities

Summary and Report

Report Date: October 19, 2010

Funded by PA Developmental Disabilities Council and Long Term Living Training Institute

Organized by the Home and Community Based Stakeholder Planning Team (SPT) Alternate formats available upon request.

Executive Summary

“All people with disabilities shall have the option to design, control and direct their own services and funding” is a primary goal of the Home and Community- Based Services Stakeholder Planning Team. In pursuit of this goal, the Power to the People Summit was held on December 1-2, 2009. The Summit, organized by the HCBS Stakeholder Planning Team with sponsorship from the PA Developmental Disabilities Council and the Long Term Living Training Institute and the support of both the Department of Public Welfare and the Department of Aging, was attended by people with disabilities, family members, advocates, service providers and key governmental decision-makers. Summit sessions were designed to provide participants with information about successful and innovative approaches to consumer controlled services being utilized in Pennsylvania and other states. The keynote speaker, Tom Nerney, Director of the Center for Self-Determination, addressed the fiscal and programmatic necessities of system re-design. Additional sessions focused on the identification of barriers which must be overcome to achieve control of services by people with disabilities. An interactive plenary session directed toward securing the commitment of senior policymakers to services controlled by people with disabilities produced a resolution which was subsequently endorsed by the Governor. The Summit concluded with action planning sessions in which participants formulated goals and recommended strategies for achieving greater consumer control of services in Pennsylvania. Three overarching goals emerged from the two-day Summit. They were to make:

 services controlled by people with disabilities standard operating procedure;

 all waivers offer opportunity for consumer control and

 Pennsylvania explore new options for Home and Community-Based services including options recently made available under the Health Care Reform law such as a demonstration waiver and State Plan amendment.

The Stakeholder Planning Team is utilizing the work done at the Summit to pursue these goals and to develop additional recommendations for the Department of Public Welfare and the Office of Long-Term Living.

2 | P a g e P t t P : S u m m i t R e p o r t Goals and Strategies

Strategic themes for future activities to support consumer control in Pennsylvania emerged from the December 2009 Power to the People Summit. Many of these themes cut across disabilities and program offices. The Power to the People workgroup summarized themes and recommended strategies from the Summit. The detailed action plans by program office can be found in Appendix 2.

Long Term Goals

1. Control of services by people with disabilities becomes standard operating procedure in PA. 2. The option for budget authority is provided in all waivers, including the Autism waiver. Budget authority should include individual determination of pay rates for workers, the flexibility to move funds within an individual budget and the ability to purchase goods and services as flexibly as possible using “individual directed goods and services” i category in waivers. 3. Different HCBS options are investigated, including a model 1115 waiver. Explore new opportunities offered in the Health Care Reform legislation, including expanding/amending the State Plan to include Personal Care. Favored approaches are implemented.

Strategies Below are strategies and activities to promote system re-design that were recommended during the action planning sessions at the December 2009 Summit.

1. Develop a process to evaluate the effectiveness of the proposed changes, evaluating both quality of life and fiscal impacts of system re-design. The evaluation system should look at learning from existing models.

2. Increase knowledge/awareness of consumer directed models including creation of a state-wide entity that provides counseling and technical assistance to individuals wishing to use a consumer controlled model. 3. Build capacity for delivery of quality Supports Broker services statewide. a. Develop standards and certification process for prospective Brokers b. Develop and offer training for prospective Brokers and consumers interested in using Supports Brokers c. Develop and maintain a Broker registry d. Encourage development of Broker’s Associations after standards are developed e. Outreach/Information

4. Build capacity for a Peer Support Network

3 | P a g e P t t P : S u m m i t R e p o r t 5. Build capacity for development of services through Microboards and Mini-boards a. All Offices formally acknowledge these models b. Support is provided for the PA Microboard Association to enable it to provide technical assistance to persons wishing to use that model and to address reimbursement and licensure issues with state Offices.

6. Continue, expand and enhance the Individual Support/Service Planning processes, Peer Assessments and Community Support Plans that help people design and plan their own services and supports.

7. Look at ways to make the system easier to use including development of common definitions across systems.

8. Explore changing the definition of “Medical Necessity” to reflect a broader understanding of support needs and the potential impact of the change on consumer control.

9. Using State Plan options, expand the availability of Personal Care services to additional populations and additional services including, for example, Personal Care Assistance by Certified Peer Specialists for persons with Mental Health needs.

10.Develop and maintain an adequate workforce by addressing adequacy of rate structures, changes in workers compensation, development of a career ladder and benefits for support service workers.

The Stakeholder Planning Team workgroup on consumer control, further, continues to utilize the action planning work from the Summit to develop additional recommendations for the Department of Public Welfare and the Office of Long-Term Living.

4 | P a g e P t t P : S u m m i t R e p o r t Background

The Power to the People Summit which occurred on December 1-2, 2009 was organized by the Stakeholder Planning Team with sponsorship from the Pennsylvania Developmental Disabilities Council and the Long Term Living Training Institute and with the support of both the Department of Public Welfare and the Department of Aging. The intent of the Summit was to bring together people with disabilities, family members, advocates, service providers and key governmental decision-makers to lay the groundwork for more people-controlled services. The specific goals of the Summit were to:

 Provide information on services controlled by people with disabilities in Pennsylvania and across the country;  Identify barriers which must be overcome to achieve control of services by people with disabilities;  Secure the commitment of senior policymakers to services controlled by people with disabilities;  Develop a statement of policy in support of services controlled by people with disabilities for endorsement by the Governor’s Disability Cabinet; and  Develop an action plan to make services controlled by people with disabilities standard operating practice in Pennsylvania.

Invitation Strategy

In order to produce a cross-disability mix representing the perspectives of consumers, providers, policy-makers, family members and departmental staff, the Stakeholder Planning Team developed a list of attendees that was comprised of: people with disabilities, families and advocates; state departmental staff; and representatives from providers/provider associations, County Human Services Directors and County Commissioners. Summit attendees represented a broad range of stakeholders from Pennsylvania’s aging, mental health, intellectual disability, autism, brain injury, physical and sensory disability communities. See Appendix 1 for the full participant list.

Summit Content

5 | P a g e P t t P : S u m m i t R e p o r t The Summit was organized to offer participants a cross-disability, national and statewide perspective on consumer control. This included information on innovative strategies being used in other states, policy and trends at the Centers for Medicare and Medicaid Services, the contemporary and projected economic environment and current practices in Pennsylvania. Information from the sessions was designed to be helpful for guiding both (1) the crafting of a resolution to be presented to the Governor’s Cabinet on Disabilities and (2) the program office specific action planning sessions that concluded the two-day Summit. Summit sessions included:

 Opening remarks by Secretary John Michael Hall, Department of Aging, and Secretary Estelle B. Richman, Department of Public Welfare (prepared and read by DPW staff on her behalf)

 Keynote address by Tom Nerney, Director of the Center for Self-Determination, on structural changes necessary to create a system of the future

 Break-out sessions on current practices and models

 Break-out sessions to identify barriers and opportunities for consumer control in Pennsylvania

 Plenary session to craft a resolution for submission to the Governor’s Cabinet on Disabilities

 Break-out action planning sessions for the Office of Long Term Living, Office of Mental Health and Substance Abuse Services, Office of Developmental Programs and a group of stakeholders representing people who face categorical exclusions in Pennsylvania’s existing service system

Opening Remarks by the Secretaries of the Departments of Aging and Public Welfare

Secretary John Michael Hall opened the Power to the People Summit and reinforced to the group the importance of the task for the next two days. He also expressed his support for the right of individuals to control and direct their own services and explained how consumer control fits into the state's overall rebalancing effort.

6 | P a g e P t t P : S u m m i t R e p o r t In Secretary Richman’s prepared remarks, she noted that the concepts described as self-direction and consumer control are spreading across disability groups and across program offices within the Department of Public Welfare.

She further shared the Department’s commitment to the goals of the Summit stating:

“It is a basic right to give people the opportunity to design and carry out the services and supports they need to make their life their own. We as a Department will work to uphold the principles of self direction to support the emotional, physical and personal well being of the people we serve in their quest to live independent lives. …The Department of Public Welfare is committed to self direction and supporting individuals to life their lives to the fullest.”

Keynote: Structural Changes Necessary to Create a System of the Future -

Tom Nerney, Director of the Center for Self-Determination

Pat Carver, Center for Self-Determination

“To continue the present system is not only fiscally unsound, it consigns those served to lives lost to loneliness, personal impoverishment, and full or partial exclusion from real community life; lives lost to regulations, program requirements, surrendering basic and ordinary freedoms; and lives lost to a sophisticated pretense at quality without equality based on shared universal human aspirations for a meaningful life.”1

Fiscal Management –

Tom Nerney opened the Summit with a keynote address focused on the necessity of redesigning service delivery/funding and some potential innovative approaches for such redesign. He noted that the Medicaid program has unsustainable fiscal problems and that states are routinely denying or limiting eligibility for fiscal reasons. Nationally, there are hundreds of thousands of people on waiting lists --some for many years. Nursing homes and public institutions continue to comprise the bulk of Medicaid long term care

1 Nerney, Thomas. “Paucity of Quality in Human Services” April 2010 7 | P a g e P t t P : S u m m i t R e p o r t expenditures. Per capita expenditures in these types of institutions are frequently two to three times more expensive than community supports.

Nerney noted that “the current Medicaid program is on a collision course with demographics.” He suggested that the sheer number of aging baby boomers who will need support is expected to overwhelm the current system. Nationally, in the population of those with developmental disabilities, more individuals live at home with an aging caregiver than receive services. Given the current fiscal state of the service system, Nerney argued, states must address alternate service system design.

The System of the Future -

“The best of the current system gives an individual the services to get up in the morning. Conversely, by norming quality on key universal human aspirations, this individual would now have a reason to get up in the morning.”2

After discussing some of the economic impetus and need for better fiscal management that will drive systems change, Nerney shared his thoughts on the system of the future. He argued that the system needs to shift from a focus on documenting services and consumer satisfaction with services to a focus on outcomes, chiefly, success in achieving universal human aspirations. This shift would involve a system driven by standard quality of life measures that apply to everyone, and will include things like home, community membership and long-term relationships.

Crucial components of this system of the future which could address both the fiscal and quality issues include:

 converting allocations into individual personal budgets that help a person to work toward universal human aspirations;

 waiver definitions that support services which enable “life affirming” activities like participation in the community and engaging in long term relationships;

 new quality standards that can be operationalized in the personal budgets; and 2 ibid. 8 | P a g e P t t P : S u m m i t R e p o r t  a melding of planning and budgeting.

Break-Out Sessions: Current Models and Practices

Participants attended two of four available break-out sessions. Session content focused on promising existing models and practices.

1. You Choose - Designing Your Supports and Services …Self-Determination, Services My Way, Delaware County MH Pilot Program, Consumer Employer Model and Financial Management Services

Panelists: Ruth Landsman, Parents Exchange

Vini Portzline, Policy Information Exchange

Erme Maula, Delaware County MH Pilot Program

Mike Auer, CIL of Central PA

This session explored various existing aspects of consumer control including how the consumer employer model works and the critical role of Financial Management Services in the model. Panelists discussed how these models apply across state systems. Personal examples of how these models work were shared by panelists.

Ruth Landsman, who is a parent, spoke about the pros and cons of being an employer in the Vendor Fiscal model of participant directed services under the Consolidated and Person Family Directed Waivers through ODP. Ruth noted that many people who have chosen the Vendor Fiscal model generally have made this choice to reduce the cost of individual services (when in a capped waiver), allowing more services under the cap, or because of past staffing problems when using agencies. The pros of using this model are: hiring, training, and scheduling your own staff and supervising their care and support of your family member. This allows flexibility in scheduling, and in many cases the hiring of extended family members who already know the individual, thus avoiding some of the training that would otherwise be necessary. The payroll/tax withholding

9 | P a g e P t t P : S u m m i t R e p o r t functions are handled by a fiscal agent contracted by ODP. Ruth noted that some of the barriers for people using this model are: the lack of ability to pay benefits, even for full- time employees; employers’ responsibility to provide training for staff, without a mechanism to pay the employee for time during which they receive training or to pay for training that an employer may not be able to deliver themselves, e.g. first aid and CPR; lack of training on how to be an employer; no coverage for liability insurance for employers.

Erme Maula presented on the Consumer Recovery Investment Fund (CRIF) Self- Directed Care project and the successes with the model. Participants in the model are provided with a budget and a Recovery Coach. With the assistance of the Recovery Coach, participants create a Recovery Plan using strength-based planning. The planning process includes identifying and budgeting for goods and services that will be purchased to help the participant attain his/her goals. Purchases may include mental health treatment, job training transportation, community memberships or lessons, educational supplies and other goods and services as identified by the project participant.

Vini Portzline, a consumer and employee of the Policy Information Exchange, spoke about designing your own services and supports. She discussed the history of consumer control models such as Act 150 Attendant Care. She shared her personal experiences and how she arrived at the way she receives her services now. She explained how different models work by comparing the agency model with the consumer control model and Services My Way.

Mike Auer, a consumer and provider of Fiscal Management Services (FMS) explained how this model of service gives the consumer the ease of managing their accounting of services through the FMS. Previously, consumer control meant acquiring your own Employer Identification Number or EIN and filing your own tax reports. With the introduction of the FMS, consumers were more at ease managing their services without the fear of handling IRS requirements.

2. Becoming Your Own Provider…Self-Directed Support Corporations, Co-ops, and Circles of Support

10 | P a g e P t t P : S u m m i t R e p o r t Moderator: Susan Tachau, PA Assistive Technology Foundation

Panelists: Grace Egun, PA Health Law Project

David Gates, PA Health Law Project

Marian Frattarola-Saulino, Values Into Action

Jennifer Howell, United Disability Services

This workshop described several models that support older adults and people with disabilities in having greater control over their lives by becoming their own service provider. Models discussed included: Circles of Support, Self Directed Support Corporations (microboards), mini-boards and co-ops. Jennifer Howell and Grace Egun explained the Circle of Support in which a person with disabilities recruits a group of individuals who are committed to advise and support that person in to have greater control over his or her life. This informal model does not enable the individual to become their own provider but supports individuals in considering and choosing other person-controlled service models as well as in monitoring the implementation of those models. It is the simplest of the models discussed to set up. Suggestions were made that the PA Dept of Education require school districts to include information on Circles of Support during transition planning.

David Gates and Grace Egun explained the Self Directed Support Corporation which formalizes the Circle of Support by having the Circle form a corporation which can become a service provider for the supported person. Marian Frattarola-Saulino provided an overview of the primary factors the Board of the Self Directed Support Corporation should consider in deciding whether to become an enrolled provider. Suggestions were made that all state offices that fund supportive services formally acknowledge and encourage microboards as a service delivery option. A microboard is a formal organization created by an individual with family and friends with the intent of supporting the person to fulfill his or her dreams, needs and desires.

Susan Tachau explained the mini-board model in which two or more individuals with disabilities form a non-profit corporation (formalizing circles of support). In Pennsylvania, the corporation can apply to become an official provider of home and community-based services. If approved, the corporation becomes the provider agency and has control over how approved service(s) are delivered, by whom, and at what rate (within Commonwealth guidelines).

In the HomeWorks project, there are three adults who have disabilities that each own one-third of their home (limited equity partnership). They have formed a non-profit corporation (comprised of 8 board members) that has been approved as a provider of

11 | P a g e P t t P : S u m m i t R e p o r t personal assistance and community integration services. More information about the assurances for consumer control that were included in the corporation by-laws is available, upon request.

David Gates described two models of co-ops: employer or service co-ops and real estate co-ops. In employer/service co-ops, individuals in need of supports form a legal entity (the co-op) which allows them to share attendants and other support personnel. This is being used in Arizona, Tennessee and Illinois. Housing co-ops are a form of housing ownership recognized under state law- 68 Pa C.S §4001 et. seq. Under this model, individuals become “members” of a cooperative association and that association, or “co-op” owns or leases a house or apartment building where each co-op member will have their own apartment. Co-op members have a voice in the operation of the co-op and have greater rights than a tenant who rents an apartment or house. This model is in use in Montgomery County for persons with mental illness and is being planned for a project in Bloomsburg for persons with diverse disabilities.

Suggestions were made by the audience that all support programs incorporate information about the various person controlled service models as part of service planning. Suggestions were also made that the state provide financial and technical support for the development of these alternative person controlled service models including support of the new PA Microboard Association.

3. Independent Supporters…Independent Support Brokers and Recovery Coaches

Panelists: Cheryl Dougan, Parent, LVCIL Transition Board, LV Medical Home Project

Kristin Ahrens, Institute on Disabilities at Temple University

Carolyn Morgan, ODP Planning Advisory

Crystal Edwards, Mental Health Association of SE PA

This session described the crucial roles of Support Brokers and Recovery Coaches in consumer control models. Support Broker services are optional services designed to help people exercise budget and/or employer authority.

The role of the Support Broker is to provide assistance, as needed, with budgeting, planning, accessing community resources and employer-related functions like 12 | P a g e P t t P : S u m m i t R e p o r t recruiting, hiring and managing workers. Models for Support Brokers used in the Office of Developmental Programs and the proposed definition for Services My Way were discussed. Panelists covered the functions a Broker could fulfill and the qualifications and training required in ODP and recommended to OLTL. Personal experiences of panelists with utilizing Brokers were shared noting that at present Support Broker services are not readily available due to the restrictions in the related service definitions and a lack of capacity building.

A Recovery Coach is a person who may self-identify as having mental health challenges although it is not a requirement. This individual coaches a person on his or her self-identified journey toward learning, growing and reaching goals. Experiences in Southeastern PA with using Recovery Coaches were shared.

4. Peer Supports, Counseling and Mentoring

Panelists: Gina Calhoun, OMHSAS

Pam Auer, CIL of Central PA

Barb Dively, Acquired Brain Injury Network of PA

This workshop focused on peer supports that are currently provided in PA for persons with mental illness, brain injury and physical disability. Peer supports, counseling and mentoring are generally provided by people with disabilities who have experience in navigating the system/their own services and want to share with peers and families who may need support. Panelists discussed: how they provided peer services (in person, by telephone, brochures); peer training curriculum and manuals that are available to train individuals that provide supports; and their own stories of how they provided peer services to others.

Gina Calhoun presented on certified peer support specialists (CPS). PA is one of 26 states currently billing Medicaid for peer support services. Nationally the role of peers as providers in mental health settings is expanding. PA is a leader for this initiative as we have over 1000 certified peer support specialists.

13 | P a g e P t t P : S u m m i t R e p o r t Gina explained that the rationale for change was that as our mental health systems transform to focus on recovery and community integration, having peers as providers is a fundamental shift in the way we do business. In 2004, PA received a 3 year mental health systems transformation grant from CMS which created a catalyst for the Peer Support Initiative to begin. Gina urged action to ensure: better distribution of CPS (there is an overabundance of trained CPS in our larger cities and a smaller number in the rural areas); more trainings across PA, so all people working in behavioral health services can incorporate recovery language into documentation that meets CMS base requirements; and funding for peer-run organizations (PRO) to advance the value of peers in employment.

Pam Auer discussed Peer Mentoring as a core function of the Centers for Independent Living and defined peer to peer work as someone with a disability who understands from a personal perspective and approaches the peer to peer relationship in a non- judgmental fashion. The peer will meet with the person when and where the person wants to meet and honors that person’s agenda and is available to provide informal skills training in areas such as self-advocacy, communication, relationship building and any other areas the person desires.

Barb Dively presented on the Acquired Brain Injury Network which is an entirely peer run organization. The Network currently has approximately 50 volunteers and 750 people on the mailing list. Peers function in any number of ways including clerical work, information and referral, advocacy and informal skills training and support. The Network created and uses a peer to peer manual and disseminates a number of publications on brain injury throughout Pennsylvania.

Break-Out Sessions: Barriers and Opportunities

Participants were split into small groups and asked to work together to identify both barriers and opportunities for people controlling their services and supports. The themes from these small group discussions are:

Barriers to people controlling their own services and supports

14 | P a g e P t t P : S u m m i t R e p o r t Complex language, “bureaucratise” Lack of acknowledgement of self- determination as a civil right

Silos Fear of consumers

Need for training: individuals, families, Concerns of policy makers about fiscal providers, administrative entities, Supports responsibility Coordinators

No Adult Protective Services Lack of infrastructure: employment, transportation, housing, waiting list, living wage for workers

Need for Support Brokers who are well Attitudinal: lack of sense of urgency, trained paternalistic

Lack of leadership development training Institutional bias in funding

No common service definitions across systems, waivers are confusing

Opportunities for people controlling their own services and supports

Unity of the group at the PTTP Summit Collaborations- cross-pollination across silos, creative thinking, unity

Michigan’s definition of “medical necessity” Consumer driven evaluations

Personal Care option Lots of information out there

Definition and measurement of quality Recovery focused MH system exists in ODP system and is related to the quality of life (IM4Q)

Some mechanisms are in place: Financial Have some individual budgets Management Systems, Support Broker definition

Use of peers and people with disabilities to Strong advocacy community – new leaders do training in the wings

15 | P a g e P t t P : S u m m i t R e p o r t Resolution for Endorsement by the Governor’s Cabinet on Disability

A plenary session was held during the Summit in order to gather information for the formulation of a resolution to be presented for consideration by the Governor’s Disability Cabinet. A resolution was drafted and submitted to the Governor’s office.

On April 9, 2010, Governor Rendell endorsed the resolution supporting collaborative work among stakeholders, Departments and the Centers for Medicare and Medicaid Services (CMS) to determine ways to evolve Pennsylvania’s service delivery system to a system in which services are ultimately controlled by people with disabilities. The resolution reads as follows:

Whereas:

1. Participants in Power to the People: A Summit on Planning for Services Controlled by People with Disabilities on December 1-2, 2009 included people with disabilities, self-advocates, family members, advocates, providers and state staff; AND 2. Participants called for a fundamental shift in our services delivery system in which people control their funding and services; AND 3. Such a change leads to enhanced independence, better living conditions, employment and transportation options for individuals with disabilities; AND 4. Such a change is fiscally responsible and conserving of limited resources.

16 | P a g e P t t P : S u m m i t R e p o r t

Therefore, be it resolved that between now and December 31, 2010:

1. We will work with representatives of the Summit participants to examine how to reach these goals and create a roadmap with concrete indicators of success; 2. We will work collaboratively and proactively with the Centers for Medicare and Medicaid Services (CMS) and the Summit representatives to examine change not only within waivers but non-waiver services and options yet to be developed including the possibility of an 1115 Demonstration Project; AND 3. Further be it resolved that we will determine ways to evolve our systems with maximum simplicity and flexibility, so that there is no wrong door and services are based on functional needs rather than labels; so that services can be for all disabilities and all ages, and so that services proactively meet need rather than adhering to predetermined definitions.

Participant Evaluation of Summit Success

Pre- and post-Summit participant surveys were conducted to gather information about participant perspective on effectiveness of the two day session and feedback on recommended action steps.

Selections from the evaluation are below. For the complete report on the Summit evaluations, please contact Kristin Ahrens [email protected].

Participant Assessment of Potential Impact of Discussed Action Items

Participant’s thoughts on which ideas discussed during Action Plan Development would make the biggest immediate impact on the system in Pennsylvania (Survey Question 5)  Strengthening support broker.  Creating flexibility in cross systems.  Converting allocations into individual personal budgets so services can be person controlled.  Expanding CRIF - Consumer Recovery Investment Funds - to allow consumers to obtain any services that they feel will help their recovery according to their self- determined plan.  Uniting cross disability communication and action plans.

17 | P a g e P t t P : S u m m i t R e p o r t  Developing a waiver that had broad eligibility criteria including both aging and disability.  Changing the definition of medical necessity to include quality indicators.  Helping people gain control of resources.  Providing cross training/recruitment of service brokers between silos.  Outcome based organization among individuals with investment /opinions on policy – and accountability.

Overall Assessment of Summit Goals

Participants were asked to rate and comment on how well the summit met the following stated goals.

1. Provide information on services controlled by people with disabilities in Pennsylvania and across the county.

Fully Met Somewhat Met Not Met These goals were…. 68% 28% 4% (n=25 ) Comments:  Pennsylvania should have this information available standard for everyone.  Not all possible service systems were covered and it was not state-wide.  Good to hear from other Silos.  We need more time to explore the existing options and develop ideas for new options.

2. Identify barriers which must be overcome to achieve control of services by people with disabilities. Fully Met Somewhat Met Not Met These goals were…. 68% 32% 0% (n=25 ) Comments:  Wish it was longer than just one session.  I think everyone already knows what the barriers and challenges are, so maybe this could have been skipped.  Better to determine this when all group discussions are collapsed.  Look at needs of individuals not service systems they can “fit their need into.”  Did a good job at identifying most of them. Lots of discussion made this clear.  The facilitated discussion was extremely helpful and informative.

3. Secure the commitment of senior policymakers to services controlled by people with disabilities.

Fully Met Somewhat Met Not Met 18 | P a g e P t t P : S u m m i t R e p o r t These goals were…. 36% 41% 23% (n=22 ) Comments:  These were not made clear. Goal could be "Develop a plan to secure the commitment..."  Did not have full participation from most of them. Did not hear from senior policy makers.  Rules should be for cross disabilities.  Not sure. Most of state people seemed engaged and on board.  Not sure I understand how this was intended to happen or if I am misunderstanding. Perhaps the support of this summit represents the commitment.

4. Develop a statement of policy in support of services controlled by people with disabilities for endorsement by the Governor’s Disability Cabinet.

Fully Met Somewhat Met Not Met These goals were…. 37% 63% 0% (n=19 ) Comments:  This needs more work.  Should get gubernatorial candidates endorsement after primary election.  Difficult to keep the group focused.  There was not enough time.

5. Develop an action plan to make services controlled by people with disabilities standard operating practices in Pennsylvania.

Fully Met Somewhat Met Not Met These goals were…. 39% 61% 0% (n=18 ) Comments:  These will happen after the meeting based on work at summit so I know it will be met  Group ran out of time.

Product Developed in Conjunction with the Summit

In order to assist Summit attendees navigate cross-departmental discussion at the Summit, organizers developed a crosswalk of terms which is available for dissemination.

19 | P a g e P t t P : S u m m i t R e p o r t Appendix I: Participant List

First Last Organization

Kristin Ahrens Institute on Disabilities, Temple University Roberta Altenor OMHSAS Linda Anthony Disability Rights Network of PA Pam Auer Center for Independent Living of Central PA Mike Auer Center for Independent Living of Central PA Joan Badger PEAL Center Josie Badger PA Youth Leadership Network Anna Ball Derek's Dream Inc. Jessica Bradley OMHSAS Virginia Davis Brown Bureau of Individual Supports, Office of Long Term Living Jamie Buchenauer Department of Public Welfare Jennifer Burnett Office of Long Term Living Kevin Burrell PA Developmental Disabilities Council Gina Calhoun OMHSAS Tracy Carney Columbia, Montour, Snyder, Union Counties Behavioral Health Services Pat Carver Center for Self-Determination Kevin Casey Office of Developmental Programs Tammy Cobb Elias Cohen, JD Carol Colasante OMHSAS James Conroy Center for Outcome Analysis Jackie Culbertson Acumen Kim Diep Meeting Well Barbara Dively Acquired Brain Injury Network of PA Vera Dobson Consultants in Context Cheryl Dougan Stakeholder Planning Team, LV Medical Home Project, LVCIL Transition Advisory Board Peggy Dougherty Oscar Drummond Self Advocates United as 1 Crystal Edwards Mental Health Association of SE PA Grace Egun PA Health Law Project Jackie Epstein ODP Sheila Fabrizio Derek's Dream Inc. Maureen Feeny-Byrnes Montgomery County Office of Behavioral Health Celia Feinstein Institute on Disabilities Marian Frattarola-Saulino Values into Action

20 | P a g e P t t P : S u m m i t R e p o r t Rachel Freund Mental Health America - Allegheny County Sarah Galbraith Meeting Well David Gates PA Health Law Project David Gingerich Office of Long Term Living John Michael Hall Department of Aging Alissa Halperin Kathy Hertzog Consumer Jack Hillyard Office of Long Term Living Gail Hoffmann Self-Determination Housing Project of PA Jennifer Howell United Disabilities Service Sheila Hunter PA Developmental Disabilities Council Zainab Jama PA SILC Maureen Jordan The Arc of PA Thomas Kisling PA Labor & Industry Sandra Kreutzer AIM Ruth Landsman Parents Exchange Marc Laucks Meeting Well Deborah Leasure Mentors for Self Determination Crystal Lowe PA Assn of Area Agencies on Aging Michael Lukach ML Services Inc. Pat Madigan PA Mental Health Consumers Association Christine Martin Shared Support Inc LuAnne Martin PA Microboard Assn Joseph Martin Paxton Ministries Erme Maula Mental Health Association of SE PA Jeanne Meikrantz ODP Michael Miller Family Member / Advocate Laval Miller-Wilson PA Health Law Project Carolyn Morgan Parents Advisory Council Graham Mulholland PA Developmental Disabilities Council James Myers Community Care Behavioral Health Organization Tom Nerney Center for Self-Determination Rosemary O'Rourke United Cerebral Palsy Assn Barbara Orstein PA Council on Independent Living Emilio Pacheco Vision for Equality Joe Pepe Vini Portzline Consumer Karen Reed Department of Health/Special Kids Network System of Care Katherine Reim UCP/CLASS Ginny Rogers Department of Public Welfare Terry Roth PA Chapters, National MS Society and PIE

21 | P a g e P t t P : S u m m i t R e p o r t Sherry Snyder OMHSAS Steve Suroviec The Arc of PA Kelly Svalbonas ODP Susan Tachau PA Assistive Technology Foundation Sabrina Tillman-Boyd OMHSAS Monica Vaccaro The Brain Injury Association of Pennsylvania Shirley Walker PAR Nina Wall-Cote Bureau of Autism Services Sue Walther MH Assn of PA Sandi Weber Three Rivers Center for Independent Living Elise Westcott Becky Lynne Willmot Gamble Autism Living and Working (ALAW)

22 | P a g e P t t P : S u m m i t R e p o r t Appendix 2: Action Plans

The Summit concluded with break-out action planning sessions for the Office of Long Term Living, Office of Mental Health and Substance Abuse Services, Office of Developmental Programs and a group of stakeholders representing people who face categorical exclusions in Pennsylvania’s current service system (e.g. people with acquired brain injury).

Each break-out session was guided by a facilitator to develop an action plan which included the following information:

 Goals

 What needs to be done (action steps)

 Organization or individual that will be responsible for making sure it’s done

 When the task will need to be completed

 Who else will be involved in working on this and how (allies/opponents)

 How can we integrate this across silos

Participants and Summit organizers agreed there was inadequate time to develop comprehensive action plans for each Department but that the work that came out of the break-out sessions gave the Stakeholder Planning Team concrete actions to pursue to increase options for consumer control in Pennsylvania.

Office of Long Term Living Action Plans

Goal 1: “Services My Way” Initiative:

Assess implementation of Services My Way to-date and explore ways to increase number of consumers, resolve policy issues and implement the program statewide.

Action steps

 Implement statewide

23 | P a g e P t t P : S u m m i t R e p o r t  Reach out to not just new but existing consumers (allies—Council on Aging; Intergovernmental Long Term Care Council; Statewide Independent Living Council  Resolve policy issues (allies—SMW Advisory Committee)  Re-offer service models for existing consumers.

24 | P a g e P t t P : S u m m i t R e p o r t Goal 2: Formalize Other Methods of Self-direction:

Formalize other methods of self-direction like Microboards, Mini-boards and Services My Way in order to maximize options available for in-home services and supports.

Action steps

 Develop a plan or white paper on other options like Microboards  Develop a Program Revision Request (PRR) for the Budget Office through the Bureau of Community Development.  Address need for training and information dissemination in order to promote recognition of other methods that need to be recognized. (allies—DD Council; PA Microboard Assn.)  Promote Microboards by supporting Microboard Association for PA

Goal 3: Workforce Development:

Develop and maintain adequate work force so we can ensure the availability, reliability and quality of direct care workers by reviewing rate structures, examine workmen’s compensation changes and enhance benefits for workers by encouraging positive workforce practices.

Action steps

 Review rate structure (allies—workforce groups; SEIU; Real Coalition; OLTL)  Examine feedback regarding the workers compensation changes. (allies— CWC; PAPCA)  Provide benefits to workers who provide services in self-directed models. Encourage positive workforce practices (allies—CLAC; SPT)

Goal 4: Consumer Control Options:

Level the playing field for consumer control options through review and, when needed, amendment of policies not reflecting a consumer control option; setting standards for enforcement, and more.

Action steps

 Review of policies that move us away from Consumer Control. (allies— stakeholders; OLTL staff)  Amend reimbursement rates system. (allies—PCIL; P4A)

25 | P a g e P t t P : S u m m i t R e p o r t  Set standards for providers and enforce. Create incentives for Consumer Control model. (allies—SILC and Providers’ Assn.)  Re-offer service models for existing consumers.

Goal 5: Consumer Input:

Consistently gather and utilize meaningful consumer input on a systemic level by getting more people involved, discussing ways to improve communications with OLTL staff and identify ways to improve input across all the silos.

Action steps

 Getting more people involved in these committees. (allies—Jenn Burnett; stakeholders)  CLAC representatives and staff meet and discuss how to improve input and communications. (allies/opponents—Community Living Advisory Committee (CLAC); OLTL staff  Communication needs to happen across silos.  OLTL designate specific staff to work with the SPT workgroup on consumer control.

Office of Developmental Programs Action Plans

Goal 1: Make Self-Direction/Consumer Control the Norm.

Develop an action plan to make services controlled by people with disabilities standard operating procedures in PA.

Action steps

 Explore using a model waiver / Demonstrate Self-Direction Waiver.  Simplify and make available training on all aspects of self-direction that is easily accessible.  Create options for people in traditional systems to have opportunity to self- direct. Whatever services a person uses, self-direction is a given (civil right). Not a program but a lifestyle – choice and control.

26 | P a g e P t t P : S u m m i t R e p o r t Goal 2: Develop a Set of Principles

Craft and adopt a set of principles that guides the Department in assuming self-direction as a right and ensuring people’s right to be fully served and supported in ways that complement interests.

Action steps

 Evaluate “Everyday Lives” against the Goal 1.  Evaluate Bureau of Autism principles against Goal 1.  Address issues in provision of Direct Support o Increase wages  Ensure training availability to all (include training for staff in PDS)  Build capacity for delivery of quality Broker services statewide  All 1230 people in State Centers should have community based ISP “costed out” (cost determination)

Goal 3: Improve Efficiency through Flexibility

Improve efficiency through flexibility - better meeting the people’s needs.

Action steps

 Address people not choosing participant-direction because they are overwhelmed by the complications of the system  Build capacity for delivery of quality Broker services statewide o Develop standards and certification process o Service Definition changes addressing some known issues by 7/1/10 o Recruitment o Develop and offer training for prospective Brokers o Develop and maintain Broker registry o Explore Co-ops/Broker’s Associations after standards developed o Outreach/Information  Include some standards around self-direction and efficiency in waiver monitoring and evaluation of implementation of current definitions.

27 | P a g e P t t P : S u m m i t R e p o r t Office of Mental Health and Substance Abuse Services Action Plans

Goal 1: Clarify Eligibility for Waiver Access for Persons with Behavioral Illnesses Clarify eligibility for waiver access for persons with behavioral illnesses by issuance of a OMHSAS/OLTL Joint Bulletin

Action steps

 Convene time(s) for a limited workgroup (the group that met in 2008) to review current draft of Joint bulletin. Involve policy staff from both OLTL and OMHSAS, IT staff and Fiscal staff. Embed language concerning self-directed care into the bulletin. OMHSAS Advisory Committee to review; Integrate via joint trainings.

 Develop an information dissemination strategy regarding the eligibility clarifications including forums for case managers and other providers and integration of information via web site www.parecovery.org, maybe a lunch and learn presentation

Goal 2: Increase Awareness/knowledge on Consumer Directed Care

Develop and provide training to raise awareness about consumer direction models and options.

Action steps

 Develop curriculum that includes defining consumer direction, models and options available. Target audience program administrators, policymakers.  Use focus groups to refine materials  Provide training in “Lunch and Learn” venue  Outreach to Network of Care  Keep OMHSAS Advisory informed of activities

Goal 3: Operationalize Self-Directed Care for People who use MH Services.

Action steps

 Support the model used in the Mental Health Association of Southeastern Pennsylvania’s Consumer Recovery Investment Fund (CRIF) Self-Directed Care  Replicate in other counties  Sustain funding, monitor progress and outcomes of CRIF and explore opportunities for ongoing MA funding. 28 | P a g e P t t P : S u m m i t R e p o r t  Support non-MA CRIF Self Directed Care for non-MA funded services  Keep OMHSAS Advisory informed of activities

Stakeholders Planning to Live Independently Today (SPLIT) Action Plans A group of Summit participants who did not fit well into existing departmental categories and services held a break-out session to formulate an action plan that is not specific to an existing department.

Goal 1: People who Need Support Services have Access to use the Tools of Self Determination to Secure the Resources Needed.

Create a cross-disability system that supports self-direction via individual budgets, financial management services and support brokering.

Action steps

 Develop common definitions across disability systems for Independent Support Brokerage and integrate via system collaborations - BIAPA, ODP, OMHSAS, Aging and OLTL.  Establish common core values and education requirements for independent support brokerage

Goal 2: Initiate a Quality Measurement System to include Quality of Life Indicators

Create a system where the focus is on outcomes, chiefly, success in achieving universal human aspirations. This shift would involve a system driven by standard quality of life measures that apply to everyone, and will include things like home, community membership and long-term relationships.

Action steps

 Form a broad stakeholder group to define each of the four quality indicators 1. Safe home 2. Real membership in community 3. Long term committed relationships 4. Production of private income  Identify who is measuring the quality of outcomes currently. Review and assess the process for applicability.

29 | P a g e P t t P : S u m m i t R e p o r t Goal 3: Power to Live Life Our Way and Control Resources (allocated and natural).

Create and operate a service system in Pennsylvania where consumers have the authority to make decisions about how they live and how resources are utilized.

Action steps

 Find common language (in place of “consumer”) that dignifies the individual.  Integrate agreed upon common language via asking all deputies to issue Bulletins regarding appropriate language and then use that language in all waiver amendments and renewals.  Research legality and feasibility of replacing service definitions with personal choice.  Convene stakeholder group for common language, means, mechanisms, and opportunities for self-controlled services in every system.

30 | P a g e P t t P : S u m m i t R e p o r t i From a CMS State Medicaid Director’s letter 11/19/2009 http://www.cms.gov/SMDL/downloads/SMD111909.pdf

Criteria for permissible “individual directed goods and services” under a section 1915(c) HCBS waiver program, or as “permissible purchases” under the section 1915(j)

The goods, services, supports, equipment, supplies, or items: • Are related to a need or goal identified in the State-approved person-centered service plan; • Are for the purpose of increasing independence or substituting for human assistance, to the extent the expenditures would otherwise be made for that human assistance; • Promote opportunities for community living and inclusion; • Are able to be accommodated within the participant’s budget without compromising the participant’s health or safety; and • Are provided to, or directed exclusively toward, the benefit of the participant.

Examples of “Individual Directed Goods and Services” and “Permissible Purchases” that have been purchased when a State allows the “goods and services” option include: small kitchen appliances such as microwave ovens; accessibility ramps/home modifications; transportation; laundry service; durable medical equipment; and pharmaceutical supplies. This list of examples is not intended to be exhaustive, and States may consider other goods and services based on a participant’s person-centered service plan and individualized budget plan.

Examples of “Individual Directed Goods and Services” and “Permissible Purchases” not covered when a State allows the “goods and services” option include: services covered by third parties or services that are the responsibility of a non-Medicaid program or service; room and board, including rent and mortgage payments; experimental treatments; social or recreational purchases that are not related to a need or goal identified in the person-centered service plan; or, vacation expenses (except for the cost of services the participant may need while on vacation).