Strategic Plan for Respite in Texas Texas Respite Coalition 2015

Strategic Plan for Respite in Texas

Texas Respite Coalition2015

…most of us are suffocating under the pressure of what’s going on because we either don’t have time, can’t find time,

don’t have the support, don’t know about the support.

CaregiverInformal Care in Texas, 2009

Caregivers in Texas

• Estimated 3.1 million caregivers in Texas at any given time

• 5 million family caregivers provided care at some time during the year

Caregivers in Texas

• 2/3 older persons with disabilities who receive care at home receive it exclusively from family caregivers;• ¼ receive care from a combination of

family and paid help;• Only 9% receive care only through a paid

caregiver.

Caregivers in Texas

• Estimated economic value of unpaid care = $34 billion

• Caregivers save the state $3.2 billion to $12.6 billion in Medicaid institutional spending annually

Caregivers in Texas

Texas data:• Average age 57• 58% are female• 82% provide care for a relative • 26% have provided care for more than 5

years• 53% have been employed at some point • 7% are age 74 or older

Caregivers in TexasCaregiver Tasks

• Transportation (82%)• Homemaking (82%)• Companionship or supervision (81%)• Healthcare assistance (74%)• Financial Assistance (70%)• Personal Care Assistance (63%)

Caregivers in Texas

Relationship of Care Recipient to Caregiver: Texas 2010

31.6%

10.6%7.8%

14.1%

4.2%

8.0%

0.3% 6.2%

17.2%

ParentParent-in-lawChildSpouseSiblingGrandparentGrandchildOther RelativeNon-relative

Impact of Caregiving

• 40-70% have clinically significant symptoms of depression

• 16% of caregivers feel emotionally strained

• More than 1/5 are exhausted when they go to bed at night

Impact of Caregiving• About one in ten

caregivers report that caregiving has caused their physical health to get worse.

• Caregivers report chronic conditions (including heart attack/heart disease, cancer, diabetes and arthritis) at nearly twice the rate of non-caregivers (45 vs. 24%).

Impact of Caregiving

• 69% working caregivers report having to rearrange their work schedule, decrease hours or take unpaid leave

• 5% turn down a promotion,10% take early retirement or leave work entirely

• The lost value of wages, social security and pensions due to leaving work early or giving up a promotion averages $303,880 per person.

Respite care is planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to unpaid caregivers who are caring for that child or adult.

ARCH National Respite Network. http://archrespite.org/home

Respite Care in Texas

Research shows that counseling and support groups, in combination with respite and other services, have positive direct effects on health behavior practices and assist caregivers in remaining in their caregiving role longer, with less stress and greater satisfaction.


• Caregivers do not identify themselves as “caregivers”

• Caregivers do not know what respite is

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Grandd

aughte

rMother


• Caregivers do not know where to find respite

• Respite services are limited

• Respite care is not affordable

• Subsidized respite services have narrow eligibility requirements



State:• Department of Aging and Disability Services (DADS)

Medicaid Waiver Programs

• Star+Plus Waiver

• National Family Caregiver Support Program (through DADS Area Agencies on Aging)

• Department Assistive and Rehabilitative Services (DARS) Early Childhood Intervention

• Department of State Health Services YES Waiver

• Texas Education Agency Non-educational community support

• DADS Texas Lifespan Respite Care Program

Primary Sources


Federal:• Veterans Administration

Private:• For profit, fee for service

• Non-profit and volunteer • Easter Seals• Alzheimer’s Association• Wounded Warriors• Faith Based Organizations

Primary Sources

2014 Texas Respite Summit• 105 people registered• Of those who reported their affiliation:

– 42 percent were caregivers – 31 percent were government employees – 19 percent were advocates– 8 percent were TRC members

• Participants included:– Disability advocates– Caregivers– State and federal agencies that provide respite– Private respite providers– Faith-based organizations

2014 Texas Respite SummitPresentations included:• Panel of family caregivers

• Opening remarks by State Rep. John Davis

• Remarks by HHSC Deputy Executive Commissioner Chris Traylor

• Information on resources for respite in Texas

• Presentation by Administration on Community Living officials on Lifespan Respite Care Program

2014 Texas Respite SummitBreakout Session #1• What are your priorities for respite care in Texas? What do we

need to improve the current system?

• What services should the Lifespan Respite Program provide to overcome obstacles or build on strengths?

Breakout Session #2• What should a Lifespan Respite system in Texas look like?

• What should the role of the Respite Coalition be in the Lifespan Respite Program?

• Who else needs to be a part of or partner with the Respite Coalition to ensure all family caregivers are served regardless of age or disability?

2014 Texas Respite SummitNine Themes

1. Outreach and awareness about respite

2. One Stop Shop for information on respite

3. Funding to make respite more affordable4. Quality, skills, and pay of paid care providers

(training)

5. Medicaid funded respite and waivers

6. Family/person centered respite

7. More available respite

8. Best practices and alternative models for respite

9. Family and community collaboration

Post-Summit Activities

• Texas Respite Coalition (TRC) meeting

– Review input from breakout sessions

– Review major themes

– Preliminary prioritization of themes

Strategic Planning Follow-

up

Texas Respite Coalition

• 3 priorities:

– Increase outreach and awareness around respite

– Make respite more affordable

– Make respite more available


up


• Public awareness campaign like “Don’t mess with Texas”

• Make respite stories, “front and center”

• De-mystify the term ”respite”

• Brand respite, like “Kleenex”

• Let caregivers know it is okay to take time for themselves

• Community outreach


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• Culturally sensitive approaches to reach caregivers of different backgrounds

– Address cultural barriers

– More literature in more languages

– Difficult for Hispanic culture to understand respite

– Messaging to hearing impaired


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2. Make respite more affordable

• Increase the availability of free and low-cost respite

• Address need for affordable respite for people who do not qualify for waiver programs

• No limitations to programs (age, income, etc.)

• Buy-in from leaders and consumers


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3. Make respite more available– Increase respite across the lifespan

Focus on filling gap in services for persons age 22-59 Increase volunteer and faith-based programs

– Increase respite for persons with Behavioral Health Needs Partner with Alzheimer’s Association and Local Mental

Health Authorities to provide training for caregivers

– Increase Emergency and Crisis Respite Develop emergency respite pool Reduce paperwork that slows down the delivery of

respite care

– Increase Respite Availability in Rural Areas


up

Respite Forums

• 3 forums:

– El Paso November 13, 2014

– Arlington December 8, 2014

– Longview December 9, 2014


up

Input from Forums

• Top priorities:

– Increase outreach and awareness around respite

– Make respite more affordable

– Make respite more available

– Improve quality, skills and pay of paid care providers


up

Input from Forums (continued)

• Other Comments:

– Need for respite care among undocumented

– Ability to do outreach is limited by the lack of respite services

– Use volunteers and collaborate with faith-based organizations

– Address inconsistencies among Medicaid respite programs

– Conduct outreach to medical providers


up

• Webinars with Summit participants

• September 2014

• January 2015

• Monthly TRC meetings

– develop goals, objectives and strategies


up

Strategic Plan for Respite in Texas

Texas Respite Coalition2015

Goal 1: Increase Outreach and Awareness of Respite Care

Objective 1: Increase public knowledge about how to find respite

– Provide information on available respite to partner agencies.

– Maintain Texas Inventory of Respite Services.

– Augment Texas Inventory of Respite Services with new providers.

– Use Take Time Texas to disseminate information on programs that offer free or low-cost respite.

Strategic Plan for Respite

Objective 2: Increase public understanding of respite• Develop public awareness campaign to increase understanding of

the term “respite”, the need for respite, and the value of respite.

• Identify and recruit all partners/potential partners in disseminating the messages.

• 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• Research and disseminate information on existing models for

respite nationwide which are replicable/sustainable models for respite care.

• Promote more volunteer/faith based programs.

• Identify funding streams for respite.

• Provide a fact sheet on ‘creative alternatives” when respite is not available in your area.

• Increase coordination among programs that offer respite.


Objective 2: Explore alternative funding options for making respite more affordable• Research and provide information on sliding scale fee models for

respite.

• Research and provide information on using vouchers for respite.

• Promote volunteer and faith-based respite programs.


Objective 3: Address critical gaps in respite care services for caregivers • Of individuals with behavioral health needs.

• Of individuals age 22-59.

• In underserved areas of the state .

• Who need emergency and crisis respite services.


Advocating for Respite CareObjective 1: Increase advocacy in support of respite care

• Establish opportunities to support legislative efforts to promote respite across the lifespan.

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

• Educate community (caregivers, advocates and faith based community).


Objective 2: Promote quality measures for respite across the spectrum

• Develop quality measures for respite, across the spectrum, based on national standards.

• Inform policy makers and key stakeholders about inequities in pay rates for care providers across the spectrum.


How to promote respite in Texas:

• Talk about respite with friends and family

• Give a talk about caregivers and respite care to a local community group

• Write an article or letter to the editor

• Encourage development of a volunteer respite program in your community


How to promote respite in Texas:

• Volunteer to assist a caregiver

• Create a fund for respite through your church or community group

• Help distribute the Strategic Plan for Texas!

• Log in to Take Time Texas


Texas Respite Coalition Texas Respite Coalition

AARP of TexasAdult Day Care Association of TexasAlzheimer's AssociationDepartment of State Health Services (DSHS) Children with Special Health Care Needs (CSHCN) Services Program Department of Family and Protective Services - Adult Protective Services & Child Protective ServicesDepartment of Assistive and Rehabilitative Services - Early Childhood Intervention ProgramEaster Seals of Greater HoustonEaster Seals North TexasInterfaith Care Partners, Inc.Cornerstone Ranch

Texas Respite CoalitionTexas Respite Coalition

Respite Care of San Antonio, Inc.Texas Aging and Disability Resource Centers AssociationTexas A&M AgriLife Extension Service, TXAlzheimer's Disease Program (DSHS) Texas Association of Area Agencies on AgingTexas Association for Home Care & HospiceTexas Council of Community CentersTexas Parent to ParentTexas Silver-Haired LegislatureVisiting Angels Williamson County

ADVISORYTexas A&M Health Science Center

Texas Respite Coalition

SUPPORT STAFF AND CONTRACTORS

Department of Aging and Disability Services

DADS – Area Agencies on Aging

Texas Association of Regional Councils

Aging Texas Well

Questions


Thank You !


Documents

Strategic Plan for Respite in Texas Texas Respite Coalition 2015