Living with HD: In-Home Care Options - Huntington's …hdsa.org/.../2015/02/Living-with-HD-In-Home-Care-Options.pdfLiving with HD: In-Home Care Options Presented by: Teresa Lee, JD,

Living with HD: In-Home Care Options

Presented by:

Teresa Lee, JD, MPH

Executive Director

Alliance for Home Health Quality & Innovation

The information provided by speakers in workshops, forums, sharing/networking

sessions and any other educational presentation made as part of the 2014

HDSA Convention program is for informational use only.

HDSA encourages all attendees to consult with their primary care provider, neurologist or other healthcare provider about any advice, exercise, medication, treatment, nutritional supplement or regimen that may have been

mentioned as part of any presentation.

Presenter Disclosures

The following personal financial relationships with

commercial interests relevant to this presentation

existed during the past 12 months:

Teresa Lee

No relationships to disclose

or list

3

Overview

• Background

• Key elements for independence

• Definitions

• Services and benefits: payers and eligibility

• Resources

4

Background: Alliance for Home Health

Quality & Innovation

• 501(c)(3) non-profit research and education foundation

• Mission: To lead and support research and education on the value home health care can offer to patients and the U.S. health care system. Working with researchers, key experts and thought leaders, and providers across the spectrum of care, we strive to foster solutions that will improve health care in America.

• www.ahhqi.org

5

Key Elements for Independence

Independence/Community LivingMedical Care

Skilled care

Personal Assistance

Services

Transportation

Housing

6

Definitions

“Home care” or “In-home care” is a broad term that includes wide range of health and social services. The following are the most common types of home care:

• Skilled home health care

• Personal Assistance Services

• Hospice services (end-of-life care)

Many other services can also be provided in the home (e.g., infusion therapy, physician house calls).

7

Definitions

“Home Health Care” is one type of in-home care:

• Primarily skilled nursing and/or therapy services

• Home health aide services also included, but patient must need skilled nursing or therapy services

• Usually Medicare, but Medicaid also pays for skilled home health

• Medicare benefit/eligibility is narrowly defined

8

Who qualifies for Medicare Home Health

Care?

To qualify, the Medicare beneficiary:

– Is “homebound”

– Needs intermittent skilled nursing and/or therapy

– Is under the care of a physician and needs reasonable and necessary home health services that have been certified by a physician, and subject to plan of care established by a physician and established in a 60-day plan of care

9

Demographics of Home Health UsersDemographics of Home Health Users

Table 2.6: Selected Characteristics of Medicare Home Health Users and All Medicare Beneficiaries, 2011

Source: Avalere analysis of the Medicare Current Beneficiary Survey, Access to Care file 2011. *ADL = Activities of daily living, such as eating, dressing, and bathing. Limitations with at least 2 ADLs is is considered a measure of moderate to severe disability

and is often the eligibility threshold for a nursing home level of care.

**In 2011, FPL for a household of 1 was $10,890, a household of 2 was $14,710, a household of 3 was $18,530, and household of 4 was $22,350.

All Medicare Home

Health Users

All Medicare

Beneficiaries

Over age 85 24.2% 12.5%

Live alone 35.6% 29.4%

Have 3 or more chronic conditions 83.2% 60.5%

Have 2 or more ADL limitations* 28.7% 10.6%

Report fair or poor health 45.8% 26.6%

Are in somewhat or much worse health than last year 41.3% 23.0%

Have incomes under 200% of the Federal Poverty

Level (FPL)**

64.5% 48.9%

Have incomes under 100% of the Federal Poverty

Level (FPL)**

34.8% 22.0%

Page 14

10

Personal Assistance Services

• Also known as:

– Personal Care Services

– Personal Attendant Services

– Attendant Care Services

– Personal Care Assistance

• Includes people that assist a person with a physical, sensory, mental, or cognitive disability with tasks that the person would perform him or herself if he or she did not have a disability.

11

Personal Assistance Services (PAS)

• For people of all ages to help with activities of daily living (ADLs) or instrumental ADLs (IADLs)

– ADLs: needed for fundamental functioning and include eating, bathing, dressing, grooming, ambulating, and toileting.

– IADLs: not needed for fundamental functioning, but enable independent living in community– e.g., shopping, housekeeping, accounting, food preparation/meds, telephone, and transportation.

• Informal or Formal

12

Who are the people/workers providing

personal assistance services?

– Caregiver

– Respite care worker

– Personal care attendant or aide

– Personal assistant

– Attendant care worker

– Home care worker or aide

– Homemaker

– Direct support professional (specifically for people with certain disabilities)

– Habilitation technician

– Direct care worker

– Home Health Aide

– Nursing Aide or Assistant (CNA)

– “Paraprofessional”

13

Home Health Care Services Industry Workforce

Chart 4.1: Total Number of Home Health Aides Employed in the Home Health Care Services Industry, 2001-2012

0

50,000

100,000

150,000

200,000

250,000

300,000

350,000

400,000

2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012

Source: Bureau of Labor Statistics, U.S. Department of Commerce Page 34

14

Home Health Care Services Industry Workforce

Chart 4.2: Number of Home Health Aides Employed in the Home Health Care Services Industry, 2010 and 2020 (projected)

345,300

665,900

0

100,000

200,000

300,000

400,000

500,000

600,000

700,000

2010 2020

Home Health Aides

Source: Bureau of Labor Statistics Employment Projections program, U.S. Department of Commerce Page 35

15

Home Health Care Services Industry Workforce

Chart 4.3: Breakdown of Persons Employed in Home Health Care Services by Sex, 2012

Source: Bureau of Labor Statistics, Labor Force Statistics from the Current Population Survey. 2012

Male 12.4%

Female 87.6%

Home Health Care Workers by Sex

Page 36

16

Hospice

What is Hospice?

•Program of care and support for people who are terminally ill (not just cancer)

•Focus is on comfort, not on curing an illness

•Specially trained team of professionals and caregivers provide care for the “whole person,” including his or her physical, emotional, social, and spiritual needs

•Services may include physical care, counseling, drugs, equipment, and supplies for the terminal illness and related condition(s)

•Family caregivers can get support (respite care)

17

Who is eligible for Medicare Hospice?

You can get Medicare hospice benefits when you meet all of these conditions:

•Eligible for Medicare Part A (Hospital Insurance)

•Your doctor and the hospice medical director certify that you’re terminally ill and have 6 months or less to live if your illness runs its normal course

•You sign a statement choosing hospice care instead of other Medicare-covered benefits to treat your terminal illness (Medicare will still pay for covered benefits for any health problems that aren’t related to your terminal illness.)

•You get care from a Medicare-approved hospice

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• Individuals pay out-of-pocket

• Private insurance: long-term care insurance policies (subject to individual policy limits); private health insurance usually covers home health care

• Medicaid:

– Eligibility: disability, income level (varies state-by-state)

– Long term services and supports – diverse array of programs, varying state-by-state

– Considerable state-by-state variation

Payment/Benefits and Eligibility

19

• Medicare:

– For 65 or older and people with disabilities (2 year waiting period)

– Skilled nursing and/or therapy is focus, but PAS provided with home health aide supervised by nurse or therapist

– Hospice

• Veterans Administration:

– Home-Based Primary Care

– Medical Foster Homes

Payment/Benefits and Eligibility

20

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21

• Home Health Compare

– http://www.medicare.gov/homehealthcompare/search.html

• Center for Personal Assistance Services:

– www.pascenter.org

– Go to “For PAS Users” and then “Help in my State”

• Centers for Independent Living

– Find your local CIL: http://www.ilru.org/projects/cil-net/cil-center-and-association-directory

Resources for accessing services/benefits

22

Resources (cont’d)

• Hospice:

– American Hospice Foundation: www.americanhospice.org

– http://www.hospicedirectory.org/cm/about/state_hospice

– www.nhpco.org (Resources, “Find a care provider”)

• Veterans Administration Resources:

– http://www.va.gov/GERIATRICS/index.asp

• Long term care cost calculator:

– http://www.aarp.org/relationships/caregiving-resource-center/LTCC.html

23

Questions/Discussion

Thank you!

202-239-3671

[email protected]