texas respite coalition strategic plan for improving the … · aarp public policy institute,...

A Strategic Plan for Improving the Coordination and Availability of Respite Care in Texas 1

Texas Respite Coalition Strategic Plan for Improving the Coordination and Availability of

Respite Care in Texas

Texas Respite Coalition December 2015


Lending a hand to those in need is a timeless Texas tradition…

when relatives, loved ones or neighbors become chronically ill or disabled, Texans step forward to provide care and support.

Every day, these caregivers demonstrate extraordinary dedication, patience and love by providing much-needed help with health care and other physical needs as

well as invaluable emotional support.

Former Texas Governor Rick Perry Family Caregivers Month Proclamation, 2014


Table of Contents

1. Executive Summary ....................................................................................................................... 4 1.1 Priority Recommendations ...........................................................................................................................5

Goal 1: Increase Outreach and Awareness of Respite Care ..................................................................................5

Objective 1: Increase public knowledge about how to find respite Objective 2: Increase public understanding of respite ...............................................................................................................................................................5

Goal 2: Respite Care is Readily Available and Affordable .....................................................................................5

Objective 1: Increase availability of respite for caregivers of individuals of all ages throughout the state .........5

2. Texas Respite Coalition .................................................................................................................. 7 2.1 Texas Lifespan Respite Care Program ..........................................................................................................7

3. The State of Respite Care in Texas .................................................................................................. 9 3.1 Caregiver Supports in Texas ...................................................................................................................... 10 3.2 Coordination of Respite Care .................................................................................................................... 11 3.3 Texas Strategic Planning Process for Respite Care .................................................................................... 11

4. Texas Strategic Plan for Respite Care ........................................................................................... 13 4.1 Priority Goals ............................................................................................................................................. 13

Objective 1: Increase public knowledge about how to find respite ................................................................... 13

Objective 2: Increase public understanding of respite....................................................................................... 13

Objective 1: Increase availability of respite for caregivers of individuals of all ages throughout the state ...... 13

4.2 Additional Objectives ................................................................................................................................ 13 Objective 2: Explore alternative funding options for making respite more affordable ..................................... 13

Objective 3: Address critical gaps in respite care services for caregivers .......................................................... 14

Appendix A: Texas Respite Coalition Membership ................................................................................. 15 State Agency Advisory Members ..................................................................................................................... 16 Administrative Support Staff and Contractors ................................................................................................ 16

Appendix B: Recommendations for Advocacy ........................................................................................ 17 Objective 1: Increase advocacy in support of respite care ................................................................................ 17

Objective 2: Promote quality measures for respite across the spectrum .......................................................... 17

Appendix C: Input from Forums ............................................................................................................. 18 El Paso Respite Forum...................................................................................................................................... 18 Arlington Respite Forum .................................................................................................................................. 20 Longview Respite Forum .................................................................................................................................. 22


1. Executive Summary An estimated 3.4 million Texans provide regular, unpaid, personal care to relatives who are older or who have disabilities. These caregivers are often referred to as the ‘backbone’ of our state’s Long-term Services and Supports (LTSS) system. They provide 3.1 billion hours of uncompensated care annually -- an estimated economic value of $36 billion each year.1

While most caregivers provide care willingly and find the caregiving relationship to be intensely meaningful, providing regular long-term unpaid care often has detrimental emotional, physical and financial impact upon caregivers. Many studies have found that caregivers are at increased risk of depression, serious illness and mortality and financial insecurity. Research has also found that the physical, mental and financial stresses of caregiving are major contributing factors behind the institutionalization of care recipients, which often results in higher public expenditures.2

Respite – regular, temporary breaks from caregiving – is essential to supporting caregivers’ physical and mental health and to keeping families together. Respite allows caregivers to rest and recharge and sustains their ability to continue to provide care in the home, where the vast majority of care recipients want to remain.

The Texas Respite Coalition (TRC) is a statewide alliance working to promote the development and expansion of quality respite programs throughout Texas. The TRC is comprised of family caregivers, respite providers and members of the aging, disability and health services networks. A partner with the Texas Department of Aging and Disability Services (DADS) for the Administration on Community Living (ACL) Lifespan Respite Care Program, the TRC supports DADS in its goal to enhance and expand the coordination and availability of respite services throughout the state.

This document represents the TRC’s strategic plan to increase the availability of affordable respite care in Texas. While the plan references state programs and services, this is a workplan for the TRC. The plan is based on extensive public input provided through a state respite summit and meetings and webinars with stakeholders. TRC members added their own knowledge of Texas caregivers and respite care to inform their recommendations.

The plan recommends strategies to increase public awareness and understanding of what respite is and how to find respite services. The plan also outlines strategies to ensure respite is both available and affordable to those who need it and increase coordination efforts among existing providers. These priority recommendations are presented in additional detail on the following pages.

At the time of this writing, DADS is proposing to establish an official state advisory committee on respite care, the Texas Respite Advisory Committee (TRAC). The TRAC will have a similar mission and scope to the TRC but will differ in its membership. The new advisory committee will be comprised primarily of outside

1 AARP Public Policy Institute, Valuing the Invaluable: 2015 Update. July 2015. 2 See Family Caregiver Alliance, Report from the National Consensus Development Conference, Caregiver Assessment: Principles, Guidelines and Strategies for Change, Volume I, April 2006 for numerous studies on the health and financial impacts of caregiving, and on the factors contributing to care recipient institutionalization. See also AARP and National Alliance for Caregiving, Caregiving in the US, 2015 Report, June 2015.


stakeholders, with state agencies serving solely in a non-voting advisory capacity. It is hoped that this document will serve as a resource for the new committee and provide the information needed to guide its efforts.

1.1 Priority Recommendations Goal 1: Increase Outreach and Awareness of Respite Care

Objective 1: Increase public knowledge about how to find respite Objective 2: Increase public understanding of respite

The first priority is to help more caregivers understand what respite is and why it is important, and to inform them about how to find respite when they need it.

A survey of Texas caregivers found that 59 percent of unpaid caregivers reported having never used respite care. Over two-thirds of the caregivers indicated they did not understand the meaning or purpose of respite.3 Many confused respite with hospice, which is care for individuals with terminal illnesses.

Outreach to caregivers is challenging because many caregivers do not understand the word “respite,” and do not recognize themselves as “caregivers.” Instead they describe themselves in terms of their relationship to the care recipient – as “mother,” “daughter,” “husband,” etc. To these individuals, the word “caregiver” refers to a professional who is paid to provide care.

Another challenge is that even though some individuals do recognize themselves as caregivers, and know what respite is, many are reluctant to use respite. Common reasons for not seeking or accepting respite include guilt about leaving their loved one in the care of a stranger, a sense of family responsibility, fear of having an outsider come into the home and cost.

In order for outreach to be successful, caregivers need to be exposed to repeated messages about the benefits of respite for both care recipient and themselves. Messages must be targeted to be effective. Messages for families with special needs children should be different from those targeted to families caring for an aging relative. Research further indicates that messages should be adapted to the values and languages of different cultural and ethnic groups.4

Goal 2: Respite Care is Readily Available and Affordable

Objective 1: Increase availability of respite for caregivers of individuals of all ages throughout the state

The second priority is to make respite more accessible to family caregivers by promoting the development of more affordable respite care models.

Lack of affordable respite care in Texas is a critical concern.5 The DADS website for family caregivers – Take Time Texas (www.taketimetexas.org) – lists over one thousand respite providers in the state, however,

3 Texas Health and Human Services Commission. Results of Caregiver Survey from 2009-12 Administration on Aging Grant, February 2013. 4 http://www.aoa.gov/AoA_programs/Tools_Resources/DOCS/AoA_DiversityToolkit_Full.pdf 5 Texas Department of State Health Services, Texas Title V Five-Year Needs Assessment for the Maternal and Child Health Services. July 15, 2010, www.dshs.state.tx.us/TitleVNeedsAssessment.pdf and Health and Human Services Commission, Results of Caregiver Survey From 2009-2012 Administration on Aging Grant, February 14, 2013.

http://www.taketimetexas.org/

http://www.aoa.gov/AoA_programs/Tools_Resources/DOCS/AoA_DiversityToolkit_Full.pdf

http://www.dshs.state.tx.us/TitleVNeedsAssessment.pdf


most are private providers that charge a fee for service. Most subsidized respite in the state is available only to those who meet Medicaid eligibility requirements, as well as specific disability or level of care standards. Even when eligible, many families have to wait years for subsidized respite services due to long interest lists.

Certain subpopulations of caregivers face greater challenges in accessing respite care. Caregivers may live in rural areas that lack respite services and public transportation systems that can bring in care providers from other communities. Family caregivers of individuals with autism, mental/behavioral health diagnoses, and adults with Alzheimer’s disease or other dementias may experience more stress than other caregivers due to the challenging behaviors that frequently accompany these conditions.6 Qualified professionals who have the skills needed to care for individuals with behavioral challenges can be difficult to find.

Unpaid family caregivers are an essential component of the support system. They keep families together, sustain quality of life for care recipients, and save the state billions of dollars in Medicaid institutional costs. The full value of their support is immense and will only increase over time as the baby boom generation grows older and as medical advances extend the lives of individuals across all age groups and health conditions. Caregivers provide a vital service that impacts all Texans. With the expansion of affordable quality respite throughout the state, Texas will be better able to support more family caregivers in their efforts. They are, as former Governor Perry stated, part of a timeless Texas tradition of families helping family in times of need.7

6 Metlife Mature Market Institute. The MetLife Study of Alzheimer’s Disease: The Caregiving Experience. 2006 https://www.metlife.com/assets/cao/mmi/publications/studies/mmi-alzheimers-disease-caregiving-experience-study.pdf; National Alliance for Caregiving in collaboration with AARP. Caregivers of Children: A focused look at those caring for a child with special needs under the age of 18, November 2009. Diament, Michelle. Autism moms have stress similar to combat soldiers. November 2009. http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/ 7 Texas Governor Rick Perry, Family Caregivers Month Proclamation, 2014

http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/


2. Texas Respite Coalition The TRC was established to assist DADS collaboration with stakeholders to develop strategies to reduce barriers in accessing respite services, improve the quality of respite services, reach underserved caregiver populations and provide training, education and support to family caregivers.

The TRC was originally formed in the late 1990s to provide input to the state about the delegation of nurse tasks in the provision of in-home services. DADS reformed the TRC in 2009 with an expanded mission and membership. New members include a diverse representation of caregivers, respite care providers, and other key stakeholders from throughout the state.

Texas Respite Coalition Vision

All Texas families caring for an older adult or an individual with a special need or disability will have convenient access to affordable planned and emergency respite options.

Texas Respite Coalition Mission

To improve the coordination and availability of quality, affordable respite care for all Texas families that provide care for older adults and people with disabilities.

Values of the Texas Respite Coalition • Respite care should be person-centered and family-centered

• Outreach about respite care should reflect the cultural and ethnic diversity of the state

• Respite care should be based on best practices and evidence-based models

2.1 Texas Lifespan Respite Care Program The Texas Lifespan Respite Care Program (TLRCP) was established by Senate Bill (SB) 271 (81st Texas Legislature, Regular Session, 2009), which directed DADS to coordinate public awareness on the role of informal caregivers and available support services. The bill also instructed DADS to establish procedures for collecting information on caregiver needs, directing caregivers to available services, and identifying the need for additional services or improvements to existing services.

The TLRCP has been supported with both state general revenue and grants from the federal government. House Bill (HB) 802 (81st Legislature, Regular Session, 2009) appropriated $1,000,000 over the Fiscal Year 2010-2011 biennium to support respite care for persons caring for individuals of all ages and any disability. This funding has remained in place over the past three legislative sessions. Texas has also received five federal grants under ACL’s Lifespan Respite Care Program to improve the integration and sustainability of respite care in Texas.

Major accomplishments of the TLRCP as operated by DADS, with input from the TRC, include:

• establishing the Texas Respite Coordination Center to coordinate and conduct outreach on respite care;

• developing the Take Time Texas website (www.taketimetexas.org) with information to support caregivers and help them find respite;


• creating a searchable online database of over 1,700 respite care providers in Texas;

• creating and publishing outreach materials including brochures for target populations and posters to promote respite care;

• developing presentations and conducting focused outreach to inform health care providers about the importance and availability of respite for family caregivers;

• conducting forums and webinars with stakeholders throughout the state to obtain input on the need for respite and recommendations for the state strategic plan for respite;

• awarding funds to ten community-based organizations across the state, which, in turn, provided respite to over 1,700 caregivers who were not able to access it from other programs;

• sponsoring training for over 350 caregivers on how to manage stress and improve the quality of support provided;

• conducting three webinars on replicable models for providing affordable respite care to promote innovation;

• creating two videos featuring family caregivers promoting the use of respite care services; and

• organizing the 2014 statewide Respite Care Summit which was attended by over 100 caregivers, industry professionals and policy makers from throughout the state.


3. The State of Respite Care in Texas In Texas, some 3.4 million family caregivers in Texas provide regular, unpaid, personal care to individuals with disabilities and serious medical and behavioral health conditions.8 According to one study, two out of three older adults with disabilities who receive long-term services and supports at home receive all of their in-home care from a family caregiver. Another quarter receives some combination of family care and paid help.9 Family caregivers assist with duties ranging from help with daily living activities, such as bathing and dressing, to more advanced tasks such as administering prescription medications and injections. Almost half perform medical or nursing tasks for care recipients.10

Family caregivers save the state a considerable amount of money. Their efforts are a primary factor in delaying or preventing the need for more expensive institutional care. Research indicates that caregivers save the state of Texas an estimated $36 billion in Medicaid costs per year.11

Most family caregivers experience immense satisfaction in caring for a loved one. They are deeply dedicated and want their loved ones to remain living in the comfort of their own home. An AARP study found that 90 percent of Americans prefer to age at home, rather than move to a nursing home.12 The support of caregivers is critical to achieving this goal.

Caregivers value their role, but often pay a high price in terms of their physical and emotional health. They report having chronic health conditions (including heart attack, heart disease, cancer, diabetes and arthritis) at nearly twice the rate of non-caregivers. About one in ten report that their physical health declined as a result of their caregiving duties. In addition, approximately 40 to 70 percent of caregivers have clinically significant symptoms of depression. More than one-fifth report feeling exhausted when they go to bed at night, and many feel they cannot handle all of their caregiving responsibilities.13

Caregiving also has an effect on financial health. One recent national survey found that six percent of caregivers reported giving up working entirely, and another four percent reported having retired early due to the need for more time for caregiving and/or because their jobs did not offer flexible hours. Forty-nine percent report having to go in to work late, leave early or take time off in order to meet their caregiving responsibilities.14 The result is approximately $300,000 in lost

Research on family caregiving over the past 35 years shows that family

caregivers can experience negative effects on their own financial situation,

retirement security, physical and emotional health, social networks,

careers, and ability to keep the care recipient at home.

AARP, Valuing the Invaluable: 2015 Update

8 AARP Public Policy Institute, Valuing the Invaluable: 2015 Update. July 2015. 9 Doty, P. (2010) The Evolving Balance of Formal and Informal, Institutional and non-Institutional Long-Term Care for Older Americans: a Thirty- Year Perspective. Public Policy & Aging Report 20, no.1 10 Reinhard, Susan C., RN, PhD, FAAN, Levine, Carol, MA and Samis, Sarah, MPA. Home Alone: Family Caregivers Providing Complex Chronic Care: Public Policy Institute, October, 2012. http://www.aarp.org/home-family/caregiving/info-10-2012/home-alone-family-caregivers-providing-complex-chronic-care.html11 AARP Public Policy Institute, Valuing the Invaluable: 2015 Update. July 2015. 12 AARP, Jana Lynott, Aging in Community: City Planners Get on Board to Help Lead the Way. May 2014

http://blog.aarp.org/2014/05/02/aging-in-community-city-planners-get-on-board-to-help-lead-the-way/ 13 Family Caregiver Alliance, Caregiver Health. 14 AARP Public Policy Institute, National Alliance for Caregiving. 2015 Report: Caregiving in the U.S.

http://www.aarp.org/home-family/caregiving/info-10-2012/home-alone-family-caregivers-providing-complex-chronic-care.html



http://blog.aarp.org/2014/05/02/aging-in-community-city-planners-get-on-board-to-help-lead-the-way/


wages, pensions, benefits and retirement over the course of a career.15

Nearly one-quarter of caregivers report the greatest difficulty they experience is stress.16 Respite helps reduce caregiver stress levels, improve individual physical and emotional health, improve family well-being, reduce hospital costs, and delay more costly nursing home or other placements outside the home.

Research shows us that by providing tailored supports we can reduce levels of stress, increase positive aspects of care, and assure that families remain the backbone of long-term care.

Supporting caregivers will allow individuals with long-term care needs to safely remain in their own homes for longer periods of

time and maintain the health and quality of life for both the caregiver and care recipient. Increasing evidence also shows that providing comprehensive supports to family caregivers reduces or

delays nursing home placement and is therefore cost effective.

Rosalyn Carter Institute for Caregiving

3.1 Caregiver Supports in Texas In Texas, 59 percent of unpaid caregivers report having never used respite care.17 Barriers include lack of knowledge about the benefits of respite for both the caregiver and care recipient, lack of affordable respite services, limited respite options, cultural traditions that emphasize family responsibility and language barriers. Over two-thirds of Texas caregivers surveyed indicated they did not know the meaning of the term ‘respite.’ Sixty-nine percent did not know how to find a licensed and reputable respite provider. Fifty-eight percent identified lack of financial assistance as their reason for not accessing respite. Texas caregivers also identified long waiting lists, a lack of respite providers, and schedule availability as barriers to accessing respite care.18

The primary sources of funding for subsidized and no-cost respite care in Texas are the state and federal governments. On the state level, funding for respite care is provided under the umbrella of the Texas Health and Human Services Commission (HHSC) by DADS, the Department of State Health Services (DSHS), the Department of Assistive and Rehabilitative Services (DARS) and the Department of Family and Protective Services (DFPS). On the federal level, the Veterans Administration (VA) provides funding for respite to veterans.

Appendix D lists the primary sources of respite care and caregiving support in Texas and the populations they serve. Among state agencies, DADS administers the majority of respite services available through the Medicaid waiver programs, state funded programs and programs funded under the Older Americans Act. These programs are designed to help older individuals and people with disabilities remain living in the community.

Unfortunately, access to respite options available through these programs is limited. Waiting lists for waiver and state funded programs currently range from two to twelve years. Each program also has

15 MetLife Mature Market Group. (June 2010) and National Alliance for Caregiving, Study of Working Caregivers and Employer Health Costs: Double Jeopardy for Baby Boomers Caring for their Parents. 16 BRFSS, 2010. 17 Texas Health and Human Services Commission. Results of Caregiver Survey from 2009-12 Administration on Aging Grant, February 2013. 18 Texas Health and Human Services Commission. Results of Caregiver Survey from 2009-12 Administration on Aging Grant, February 2013.


narrow eligibility criteria which tend to exclude certain populations, such as adults under age 60.

Individuals fortunate enough to be enrolled in one these programs also face limitations on the number of respite hours their caregivers can receive. Program limitations on payment for respite care providers are an additional barrier to finding and accessing respite care.

With Texas having the second largest veteran population in the United States, the VA is another major funder of respite. Respite programs available through the VA include the Caregiver Support Program, which is available to post 9-11 veterans, and the Respite Care Program, which serves all other veterans. Both programs have limitations on the amount of respite care allowed. VA staff indicate there are not enough hours of respite care available to address the needs of veterans.

Other sources of respite in Texas include disability or age-specific nonprofit organizations, such as the Alzheimer’s Association and Easter Seals. No-cost, faith-based respite programs throughout the state also offer half-day or evening programs for caregivers of children with disabilities, or caregivers of persons with Alzheimer’s disease. The remainder of respite care in Texas is private pay care offered by for-profit organizations, primarily for caregivers of older adults. All of these respite services, nonprofit, volunteer and private pay programs, are less available in small communities.

Finally, another resource for respite was created by the Texas Legislature to serve caregivers providing care for persons of any age and any disability and who could not receive respite through existing programs. This state funded program, the Texas Lifespan Respite Care Program, which receives

$1 million per biennium, has funded respite care to over 1,700 caregivers.

3.2 Coordination of Respite Care TRC has served as an advisor to DADS on strategies to improve coordination of respite care. As noted, DADS has proposed new rules to establish a more formal advisory committee, the Texas Respite Advisory Committee. Since this plan was written by the TRC, information on its membership and role is provided below.

The TRC consists of 27 agencies and organizations, which assist DADS in developing strategies to reduce barriers in accessing respite services, improve the quality of respite services, reach underserved populations, and provide training, education and support to family caregivers. TRC meets bi-monthly and includes representation from most of the state agencies that offer respite, nonprofit and advocacy groups, disability organizations, faith-based respite care providers, for-profit respite care providers and family caregivers. TRC members represent caregivers of children, older adults, individuals with Alzheimer’s disease, intellectual and developmental disabilities and various medical conditions (see Appendix A for a list of TRC members).

3.3 Texas Strategic Planning Process for Respite Care On June 14, 2014, DADS, the TRC and the Texas Respite Coordination Center (TRCC) sponsored the first Texas Respite Summit. The purpose of the Summit was to convene TRC members, caregivers, policy makers and other interested stakeholders to provide input on a state strategic plan on respite care.


Texas Parent to Parent served as a key partner in the effort and helped by drawing families of children with special needs to the event and managing registration for the Summit.

Approximately 105 people registered to attend the Summit. Among participants reporting their affiliations, 42 percent were caregivers, 31 percent were government employees, 19 percent were advocates and 8 percent were TRC members. As a result of active recruitment and partnerships with TRC members and others, a diverse group of caregiver participants included varying populations: children with complex care needs, adults with disabilities, older adults, veterans and persons with mental/behavioral health needs.

During the Summit, state leaders and federal personnel discussed the current state of respite care in the state and nation. State Representative John Davis detailed his continuing commitment to the funding and expansion of respite care in the Texas. Health and Human Services Deputy Executive Commissioner Chris Traylor, now serving as Executive Commissioner, discussed the agency’s goals and commitment to use information from the Summit to advance respite initiatives in the future. Several panels made presentations during the event, including a panel of caregivers who shared their personal experiences with using respite care.

During the afternoon of the Summit, participants gathered into smaller groups to brainstorm strategies for creating a viable respite system throughout the state. The ideas and information that each group generated were shared with all participants. This input served as the foundation for the strategic planning process.

The TRC reviewed the many recommendations made by participants, grouped the recommendations into major themes and then ranked the themes based upon members’ votes. The three highest priority themes which emerged through this process were:

• Increase outreach and awareness about respite

• Increase funding availability to make respite more affordable

• Make respite more available

The TRC continued its work on the Strategic Plan from July 2014 through June 2015. The TRC held monthly meetings during which members developed draft goals, objectives and strategies to address the key themes, listed above. The TRC sponsored four webinars to engage summit participants and solicit their input on the plan. DADS and TRCC staff conducted public forums in West Texas, North Texas and East Texas to obtain stakeholder input on the plan. The information gathered at these forums is provided in Appendix C.

The Advocacy subcommittee of the TRC developed recommendations pertaining to Advocacy for Respite. This subcommittee consisted of TRC members who are not state or federal employees and are not restricted from lobbying the state legislature. Advocacy recommendations are in Appendix B.


4. Texas Strategic Plan for Respite Care 4.1 Priority Goals The TRC identified three objectives as the top priorities of its plan. These are the objectives that the TRC will be working on in the next several years.

Goal 1: Increase Outreach and Awareness of Respite Care

Objective 1: Increase public knowledge about how to find respite

Strategy 1A: Provide information on available respite services to partner agencies.

Strategy 1B: Support ongoing maintenance of Texas Inventory of Respite Services.

Strategy 1C: Augment Texas Inventory of Respite Services with new providers.

Strategy 1D: Provide information on programs that offer free or low-cost respite for posting on Take Time Texas.

Objective 2: Increase public understanding of respite

Strategy 2A: Develop public awareness campaign to increase understanding of the term “respite”, the need for respite, and the value of respite.

Strategy 2B: Identify and recruit partners/potential partners in disseminating the messages.

Strategy 2C: Evaluate effectiveness of outreach materials and methods.

Goal 2: Respite Care is Readily Available and Affordable

Objective 1: Increase availability of respite for caregivers of individuals of all ages throughout the state

Strategy 1A: Research and disseminate information on existing models for respite nationwide which are replicable/sustainable models for respite care.

Strategy 1B: Promote additional volunteer/faith-based programs.

Strategy 1C: Identify funding streams for respite services.

Strategy 1D: Provide a fact sheet on ‘creative alternatives’ when respite is not available.

Strategy 1E: Promote increased coordination among programs that offer respite.

4.2 Additional Objectives The TRC identified the following additional objectives for Goal 2 as issues that need attention, but are not the first priority.

Goal 2 (continued): Respite Care is Readily Available and Affordable

Objective 2: Explore alternative funding options for making respite more affordable

Strategy 2A: Research and provide information on sliding scale fee models for respite.

1) Provide information to post on Take Time Texas.

Strategy 2B: Research and provide information on using vouchers for respite.


1) Provide information on how to evaluate for potential implementation and post on Take Time Texas.

2) Support policies that encourage contractors under state funded Lifespan Respite Care Program to use some portion of their funds for vouchers.

Strategy 2C: Promote volunteer and faith-based respite programs.

Objective 3: Address critical gaps in respite care services for caregivers

Strategy 3A: Of individuals with behavioral health needs.

1) Investigate resources available through DADS Intellectual and Developmental Disability (IDD) Systems Improvement work group.19

2) Adapt existing resources to provide training for unpaid respite providers; i.e. Alzheimer’s Association, local mental health authorities.

3) Promote increased training in positive behavior supports.

Strategy 3B: Of individuals age 22-59.

1) Work with partner agencies to promote awareness of the need for respite services among these caregivers.

Strategy 3C: In underserved areas of the state.

1) Identify mechanisms for providing respite in areas that lack public transportation.

2) Tap into existing networks that support individuals in underserved areas: schools, health clinics, Extension Service, aging and disability resource centers (ADRCs.)

3) Recommend that DADS adapt the Community Assessment Toolkit to include a respite component.

4) Identify local champions to promote respite.

Strategy 3D: Who need emergency and crisis respite services.

1) Support development of a hotline for emergency respite care services.

2) Assist in identifying and revising policies that slow down the delivery of respite.

3) Recommend the state develop pool of funds specifically for emergency respite.

4) Recommend the state consider a pre-enrollment process to reduce wait for respite.

19 DADS IDD Workgroup assists in evaluating stakeholder experience, evolving needs, model design, barriers to participation, and new initiatives in serving individuals with IDD.


Appendix A: Texas Respite Coalition Membership Member Organization Representative Title

AARP of Texas Amanda Fredriksen Director of Advocacy

Trey Berndt Associate State Director

Adult Day Care Association of Texas Stephanie Hoffman President

Alzheimer's Association Christian Wells Executive Director

Cornerstone Ranch Mary Klentzman Executive Director

Easter Seals of Greater Houston

Elise Hough Chief Executive Officer

Linda Latimer Director, Respite Services

Easter Seals North Texas Lenee Bassham Vice President, Community Living &

Employment Services

Maria Hiney Executive Assistant

Interfaith Care Partners, Inc. John K. Burk, PhD Senior Vice President

Respite Care of San Antonio, Inc. Cara Magrane Chief Operating Officer

Texas Aging and Disability Resource Centers Coalition

Janice Sparks, PhD Care Connection

Deborah Moore Care Connection

Maggie Green Care Connection

Lee Brown East Texas ADRC

Texas Association of Area Agencies on Aging

Yvette Lugo Director, Rio Grande AAA

Jennifer Scott Director, Capital Area AAA

Rene Oldstein Program Manager, Capital Area AAA

Texas Association for Home Care & Hospice

Ellen Martin Director of Clinical Practice & Regulatory Affairs

Brian Cavuto Pediatric Research & Policy Specialist

Texas Council of Community Centers Erin Lawler Associate Director, Intellectual and

Developmental Disability Services

Texas Parent to Parent Laura Warren Executive Director

Texas Silver-Haired Legislature Pat Porter Speaker

Visiting Angels Williamson County Ryan Searight Owner


State Agency Advisory Members

Member Organization Representative Title

Department of Aging and Disability Services (DADS)

Martha Diase Manager, Center for Policy and Innovation

Amy Flanigan Area Agency on Aging, Program Coordinator

Department of Assistive and Rehabilitative Services (DARS) Early Childhood Intervention Program

Karissa Garcia Advisory Committee & Outreach Specialist

Jean Origer Program Specialist

Department of Family and Protective Services - Adult Protective Services (APS) & Child Protective Services (CPS)

Rachel Duer Community Engagement Specialist, APS

Kristen Jones Developmental Disability Program Specialist, CPS

Department of State Health Services Alzheimer's Disease Program

Lynda Taylor Coordinator

Department of State Health Services Children with Special Health Care Needs (CSHCN) Services Program

Ivy Goldstein Program Specialist

Manda Hall, MD Title V Children with Special Health Care Needs Director

Texas A&M AgriLife Extension Service, TX Andrew B. Crocker Extension Program Specialist,

Gerontology

Texas A&M Health Science Center, Rural & Community Health Institute, College of Medicine

Jettie Eddleman

Administrative Support Staff and Contractors

Member Organization Representative Title

Texas Department of Aging and Disability Services (DADS)

Joyce Pohlman Community Access and Grants Unit, Grants Coordinator

Wendy Francik Community Access and Grants Unit, Grants Coordinator

Maria Rodriguez Community Access and Grants Unit, Program Specialist

Texas Association of Regional Councils (TARC)

Ginny Lewis Associate Director

Keely Hill Aging Program Coordinator


Appendix B: Recommendations for Advocacy Advocating for Respite Care

A subcommittee of the TRC identified additional objectives on increasing advocacy in support of respite care. The subcommittee was comprised solely of non-governmental representatives that have the authority to conduct advocacy with the Texas legislature and state policy makers.

Objective 1: Increase advocacy in support of respite care

Strategy 1A: Establish opportunities to support legislative efforts to promote respite across the lifespan.

1) Identify key stakeholders willing to serve as Subject Matter Experts onrespite for engagement with legislators and advocates.

Strategy 1B: Pursue increased state funding for respite care with the goal of making available across counties, age groups and disabilities.

1) Recommend and support state budget items to increase funding forrespite.

Strategy 1C: Educate community (caregivers, advocates and faith based community) via ‘How To’ links on the Take Time Texas site. http://www.dads.state.tx.us/taketimetexas/

Objective 2: Promote quality measures for respite across the spectrum

Strategy 2A: Develop quality measures for respite across the board, based on national standards.

1) for MCO’s.

2) for community based providers.

3) for state contracted providers.

Strategy 2B: Inform policy makers and key stakeholders about inequities in pay rates for care providers across the spectrum.

1) Develop tool to identify and display pay rate differences.

http://www.dads.state.tx.us/taketimetexas/

http://www.dads.state.tx.us/taketimetexas/


Appendix C: Input from Forums El Paso Respite Forum

November 13, 2014 Rio Grande Area Agency on Aging

Attendees

Name Agency

Andrea Ramirez Project Amistad

Felix Cabrera DFPS

Jaime Barceleau Paso del Norte Children’s Development Center

Patrick Turley DFPS

Raul Huerta DADS

Sandra Gonzalez Rio Council of Governments (COG)

• The term “Medicaid funded” respite is misleading. Respite is a small part of Medicaid.

o Need funding or respite for people who do not qualify for Medicaid; i.e. retired middle income, teachers, retired federal employees.

• Not really gaps in services; more like patches of availability.

• Need respite on weekends. For those who are working, there is no rest.

• Outreach should include outreach to medical professionals:

o Doctors prescribing respite will result in less guilt.

o Make it more likely that insurance will cover respite.

o Make it part of the discharge plan

There is not a required visit by a social worker prior to discharge; social worker only comes upon request.

Make it mandatory for social workers to discuss respite.

• Department of State Health Services - Community Resource Center Grant has minimum funds for respite

• Limited funding for respite

• Increase awareness

• ECI allows family member to be the respite provider

o ECI – provides minimum funding for respite

• Need more qualified respite care providers


o Gap includes lack of skilled providers.

o More likely if there are adequate salaries.

o Need skilled workers for children with disabilities.

o Day care programs do not have this capacity.

o Parents cannot get to work because they cannot find a skilled caregiver and respite is not affordable.

o Quality, skill, pay.

o There need to be some requirements regarding licensing.

• Peer to peer support – very effective when child is being mentored by a peer

• Emergency respite: define urgent; for families, everything is urgent

• Children grow and then don’t qualify for services

o Mothers have to stay home because there are no caregivers

• Undocumented residents need respite.

• What has legislature said about respite? What are the Sunset Commission recommendations?

o If State Supported Living Centers (SSLCs) close, families will need respite

• Managed transportation is drawing in a lot of caregivers who need respite.

• Helping kids with behavioral issues is overwhelming.

• Adult Protective Services (APS) – most abuse and exploitation is often related to caregiver stress.

o Need adult crisis center to provide respite.

o Otherwise may have to go to unlicensed board and care.

• 40 quarters of employment is an issue. Consolidation may resolve that.

• Clearinghouse needed.

• Medically Dependent Children’s Program - only small amount for respite.

• Best practices require funding.

• Clearinghouse for care providers – going through agencies is too expensive. Cheaper to hire directly.

• VA will not accept some vets into the Veterans Home because VA does not have capacity to serve them, i.e. too many medication requirements.

• Respite service is support for family – reduces institutionalization.

• Fund Community Resource Coordination Groups again to discuss complex cases.

o Wagner Peisner discretionary grant funds may be a funding source.


Arlington Respite Forum November 13, 2014

North Central Texas Council of Governments

Attendees

Name Agency

Courtney Shaw APS

Cindee Green ComForCare - Denton

Kenneth Green ComForCare - Denton

Dalia Fuentes Bryan's House

Marilyn Quinones Bryan's House

Terri Palomino Cigna-HealthSpring

Denise Adams North Central Texas COG

Mary Klentzman Cornerstone Ranch

Pam Brandon Ageucate

David I Johnson 211 United Way Tarrant

Lenee Bassham Easter Seals of Texas

Gail Phills Alzheimer's Association

Gretchen Feinhals The Senior Source

Virginia Witt DARS N.E. Field Office

Norma Rodriguez DADS

Regina Wearden ADRC

Dulce Ramirez Dallas ADRC

Ellen Bauman Family Member

Mandy Reyna COG ADRC

Jerry Mosnar SCSTC.org

Angie Estes North Central Texas AAA

• No public transportation in rural communities and wealthier communities.

• Providers do not want to go into low income areas.

• Senior Companion program serves low income caregivers but does not provide medical respite.

o Faith based respite could be utilized in rural communities.


o IDD Needs Council is having a faith-based symposium in January. Contact Carolyn Presnall.

• Caregivers are increasingly providing medical care.

• No respite care for undocumented residents.

o Federal requirements bar assistance for undocumented workers.

o County programs that used to serve this population are no longer in operation.

o Catholic Charities used to serve this population but lost funding.

o Sometimes have to put older adults on a bus to Mexico in order to get them medical care. This separates them from family/support system.

o DADS has some programs available for undocumented but there are interest lists and there is no emergency funding.

o Area Agency on Aging does not need Social Security number to provide care.

o Growing number of undocumented older adults.

• Need information on programs for children with special needs.

o Licensing for child care limits programs to individuals up to 12 years of age.

o Do not have overnight respite for people 13-21 years of age and not eligible for Medicaid.

• Medicaid waiver programs require certification – hard to find these rules.

o Betsy Childs, Helping Restore Ability, provides training on waivers.

• Need flexibility with hours of service.

• Hospital Social Workers should be educated on respite.

• People need discharge plans.

• We should look at best practices of other states.

• Many other states pay family members to provide care.

o AAAs have caveat that family caregivers cannot live in home and must be 18 years of age or older.

o Star Plus will allow families to hire family members.

o CDS: Consumer Directed Services also allows family members as caregivers.

Needs to be more broadly advertised.

After age 21, no longer eligible.

Need to get in front of legislature.

o Supported Home Living and Respite do not pay the same amount.

• Medicaid Estate Recovery Program (MERP) scares people away from using services.

o Need to look at how we present this information to individuals.

o Educate providers about MERP.


Longview Respite Forum December 9, 2014

Community Healthcore/East Texas Aging and Disability Resource Center

Attendees

Name Agency

Evelyn Davis DADS

Julie Myers East Texas ADRC

Kathy Weeks Alzheimer’s Association

Kameron Kennedy EPIC

Sandi Brenton Alzheimer’s Association

Christine Jackson Upshur Manor

Kelley Ham Every Child

Juanita Beason East Texas AAA

Al Ti Pippins East Texas AAA

Sandra Taylor Community Healthcore

Cindy Hanson CHC Admin Tech

Chris Carpenter East Texas Council on Alcohol and Drug Abuse

Sandra McGregor East Texas ADRC

Bettye Mitchell AAA

Karen Holt ADRC/East Texas Center for Independent Living

Kayla Borens East Texas ADRC

Gary Muckleroy AAA

Laura Mattheis East Texas Center for Independent Living

Demetria Anderson East Texas Council on Alcohol and Drug Abuse

Lee Brown East Texas ADRC & Community Healthcore

• Outreach and awareness should continue but affordability would help alleviate need.

o Limited Medicaid funding for waiver programs limits the amount of outreach that can be done. If you do outreach, that increases demand. Then, when people seek services, they are discouraged because the services are not available.

o Ethical dilemma is created if families request services and you don't have the staff to support them.

o Alzheimer's Association in East Texas has only one funded position for 12 counties.

o Greater Dallas Alzheimer's Association has only 18 paid positions for 34 counties.


o If funding is not made available for staff positions, then services cannot be provided.

• Amount of paperwork is too much for the limited amount of funding they receive.

o Citizens feel if you cannot provide service you are doing them a disservice.

• Quality Adult Care Centers are needed.

• The definition of “respite” is confusing.

o No general definition of respite from multiple sources.

o MDCP definition of respite is different from HCS. When individuals transition from MDCP to HCS they expect respite to be the same.

o DADS staff do not always know the rules about what is allowable.

o Verbiage should be simplified (help, relief, etc.).

o Asking caregivers “What do you need?”

o People with limited English proficiency have enough trouble speaking the language, never mind understanding the word “respite”.

• Bring together people in policy development.

o What are the core aspects of respite?

o Develop common language around respite.

• Conduct outreach to medical professionals.

o Reaching physicians would help special needs community since parents are often isolated.

o Outreach to physicians rather than do mass marketing.

o Having peer providers for physicians and parents could be more effective than a marketing campaign.

o Also consider working with a for profit on a marketing campaign.

• Support alternative models.

o Mother Frances Trinity Services Training - respite support for moms.

o Unforgettable Tuesday Day Club (Alzheimer’s Association).

Need help finding volunteers.

Most current volunteers are older adults who may not be able to continue; if they leave, there are no new volunteers to take their place.

Use nursing students each semester but they only come one time.

o Marble Baptist Church needs funding to start programs.

o Leslie Stevens of Joy Ministries works with churches to develop programs.

Need training for volunteers and start up.

• Families are sending children to nursing facilities because of lack of support. Community based programs could help.


o Families do not know where to get services.

o Programs are complex and hard to understand.

o Staff turnover results in staff not knowing their programs.

o Sometimes families need help 8:00 p.m. to 8:00 a.m.

o Only pediatric child care facility is in Gladewater.

o State saves money by having families provide support.

• Need a central point of communication.

o Site should include providers and information on what each agency provides.

o Click on each agency to learn what services they provide.

o How does Take Time Texas come up in search engines?

• East Texas needs to identify local issues and speak to legislature.

o Grass roots effort could work in this region.

o Gather stories and contact legislature.

o Need to identify three things they want the legislature to support.

• Three ways to reach families of children with special needs:

o Local Authority

o Primary Care Physician

o School

• There is a need for skilled caregivers of individuals with Autism Spectrum Disorder.

texas respite coalition strategic plan for improving the … · aarp public policy institute,...

Documents