N RC Federal Policy Update And Advocacy Refresher

1. NRC Federal Policy UpdateAnd Advocacy Refresher November 3, 2011, Glendale, AZ

2. What’s New in the 112th Congress

3. Headlines from the 112th Congress • Lifespan Respite Reauthorization Bill Introduced • National Family Caregiver and OAA Programs Expire • Implementation of Health Care Reform • CLASS Program Suspended by HHS • Funding Debacle

4. What is Lifespan Respite? Coordinated systems of accessible, community-based respite services for all family caregivers regardless of age or special need.

5. Perspective from the Outside Inside Crisis Care Respite Providers Lifespan Respite System Community based Orgs. Child Health Welfare Respite Coalition Training Disability Services Links to Prevention Services Human Services Medicaid Health- Mental Health Aging ADRC Quality Assurance Consumer Direction Public Awareness

6. House Lifespan Respite Reauthorization • Introduced by Reps. Langevin (D-RI) and McMorris Rodgers (R-WA) on October 26 (HR 3266) • No changes to current law. Reflect comments received from AoA. • Extends program for five years and Authorizes $50 million from FY 12- FY16

7. Senate Lifespan Respite Reauthorization • No Senate Champion • NRC Submitted Statement Signed by 35 National Organizations to Senate HELP Committee in support of expedited action http://www.archrespite.org/images/HELP_Staff_Statement_Sept_9_2011.pdf

8. National Family CaregiverSupport Program (NFCSP) • Primarily helps persons any age who serve as unpaid caregivers for persons sixty or older • Other eligible family caregivers include: • Those providing care for individuals with Alzheimer’s and related disorders, regardless of age; • Grandparents and relative caregivers(not parents) 55 and older providing care to children under age 18 or to adults age 18-59, with disabilities. • Tribal Organizations can set a lower age than 60 for members to be considered as elders eligible for services.

9. NFCSP Reauthorization • Title III E of the Older Americans Act. All OAA programs expired Sept. 30, 2011 • Senate HELP Committee held Listening Sessions on Caregiver Provisions. NRC Comments: • http://www.archrespite.org/images/docs/OAA_HELP_Statement.pdf • Expand eligibility to older parents who have adult children with disabilities living at home • Senate’s goal is to approve a bill by the end of this session. House future less certain.

10. Caregiver Assessments • Strengthening Services for America’s Seniors Act drafted by Senator Kohl, chair of Senate Special Committee on Aging; Senator Mikulski, Chair of Subcommittee on Children and Families in HELP • Would establish voluntary state program to assess family caregiver’s need for services (e.g., counseling, respite care). • Requires states to provide referrals that may be available from local, state and private-sector programs. 

11. Funding Debacle • FY 12 Budget?? • Senate Committee approves bill that level funds lifespan respite and NFCSP • House bill draft released but no committee action – same levels as Senate • CR Probable Outcome

12. Super Committee • Joint Select Committee on Deficit Reduction, a bipartisan group tasked with finding at least $1.2 trillion in budget cuts, is nearing its deadline of November 23. • If they don’t reach agreement, automatic cuts occur in FY 13 • FCA and NRC draft joint letter urging Super Committee to preserve programs important to family caregivers • http://www.archrespite.org/images/Letter_to_Super_Committee_10.14.11.pdf

13. NRC joins hundreds of groups in news ad calling on Congress to save Medicaid from Super Committee cuts.

14. Affordable Care Act (ACA) Implementation ACA mentions “caregiver” 46 times and “family caregiver” 11 times. Law includes: • Training for direct care workers • Community First Choice Option • Funding for Aging and Disability Resource Centers • CLASS Program

15. HHS Suspends CLASS • National voluntary program to finance long-term services and supports • HHS establishes CLASS office in AoA under the jurisdiction of Assistant Sec. Greenlee • Both House and Senate eliminate funding for CLASS in pending FY 12 funding bills • HHS decides CLASS does not have potential to be solvent and shuts it down.

16. Important Resources • National Respite Coalition Legislative Alerts, Talking Points, Funding News • Family Caregiver Alliance Innovations Clearinghouse tracks federal and state legislation • http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2324&chcategory=43&group=Federal+Legislation&subgroup=112th+Congress+%282011-2012%29&from=2011&to=2012 • Family Caregiving 2010 Year in Review (March 2011) • http://caregiver.org/caregiver/jsp/content/pdfs/2010-Caregiver-Guide.pdf

17. Health Care Reform Resources • AARP’s Health Reform Law Creates New Opportunities to Better Recognize and Support Family Caregivers • http://assets.aarp.org/rgcenter/ppi/ltc/fs239.pdf • ARCH’S Building Blocks for Lifespan Respite has good summary of ACA health care reform provisions important to respite. • http://www.archrespite.org/images/docs/Lifespan_Summit_Docs/Building_Blocks_for_Lifespan_Respite.pdf

18. How Can We Help Nationally?

19. Lifespan Respite Care ActNext Steps • Urge your US House Member to Cosponsor HR 3266, Lifespan Respite Reauthorization • Urge Senators to introduce bill with no changes to current law. • Urge both House and Senate to act quickly to reauthorize the program.

20. Super Committee Recommendations • Urge Congress not to cut important entitlements such as Medicaid long-term services and supports, Medicare and discretionary programs that support family caregivers. http://www.deficitreduction.gov/public/House • Ways and Means Human Resources Subcommittee held a hearing last week on the children’s Supplemental Security Income (SSI) program 

21. Advocacy Refresher

22. Factors That Influence Elected Officials: Grassroots Elected officials pay attention to the people who elect them, but only if those people know how to use their “Power of Constituency”

23. Overcoming the Fear Factor

24. Legislators are People Too • First thing to remember: Policy makers won’t think you are rude for stating what you want, and may think it odd if you don’t. Part of their job is to be asked and part of your job is to ask.

25. Effectiveness of Contacts Most effective are face-to-face visits Next -- Visits to sites or programs with personal stories Still highly effective, even if only as many as ten are received: • Phone Calls with appropriate staff • Letters • Emails

26. How Should You Ask? • Know Your Facts • Know Why Issue is Relevant • Make it Your Own Message • Be Positive • The Five Minute Rule • Use Personal Stories!!!

27. Ask members to… Meet in the district Visit a site/event Write an article Demonstrate ongoing support through: Letters Votes Legislation You should… Attend fundraisers Give recognition awards Thank your lawmakers Train and organize your grassroots Keep track of important data about your community Ideas for an Ongoing Relationship

28. Help is Available • For latest legislative news, talking points, and fact sheets visit National Respite Coalition • http://www.archrespite.org/national-respite-coalition • See General Guidance on Contacting Congress • http://www.archrespite.org/national-respite-coalition/legislative-alerts#AdvocacyVisit • Use NRC’s Advocacy Tip Sheet for Face to Face Meetings • http://www.archrespite.org/images/ARCH/Advocacy_Tip_Sheet_for_Face.pdf

29. For More Information Jill Kagan, MPH Program Director Annandale, VA 703-256-2084 jbkagan@verizon.net