Living with HD: In-Home Care Options - Huntington's...
Transcript of Living with HD: In-Home Care Options - Huntington's...
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
18
• 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
Trend to Watch: Dual Eligible Beneficiaries
! !
! "#$#%"$&'$#( ') ( * "#"+,-$,". /') &"0#* /#,'1 /* 2#+,-$,"2#+'32-'1 4$&'5&"0"6&/'7 /#/3"%"$-"/+'82* 9$-/( :''; ,$,/+'<",='> /* 2-$#( $'23'? #( /-+,$#( "#0') 99-2. /( '6@'8> ; '
" #$%&' () !" *+* , ' - .!
? +"#0'#/<'$4,=2-",@'"#',=/') 332-( $6&/'8$-/') %,A',=/'8/#,/-+'32-'> /( "%$-/'$#( '> /( "%$"( '; /-. "%/+'B8> ; C'"+'
&$4#%="#0'( /* 2#+,-$,"2#+',=$,'+//D',2'"* 9-2. /'%$-/'$#( '%2#,-2&'%2+,+'32-'9/29&/'<=2'$-/'( 4$&&@'/&"0"6&/'32-'
> /( "%$-/'$#( '> /( "%$"( E'''F=/+/',=-//'@/$-'( /* 2#+,-$,"2#+A'"* 9&/* /#,/( '6/0"##"#0'"#'G4&@'HI JKA'$-/'
"#,-2( 4%"#0'%=$#0/+'"#',=/'%$-/'( /&". /-@'+@+,/* +',=-240='<="%='6/#/3"%"$-"/+'-/%/". /'* /( "%$&'$#( '&2#0L,/-* '
%$-/'+/-. "%/+E'F=/'( /* 2#+,-$,"2#+'$&+2'$-/'%=$#0"#0',=/'3"#$#%"#0'$--$#0/* /#,+'$* 2#0'8> ; A',=/'+,$,/+A'$#( '
9-2. "( /-+E') +'23') 9-"&'HI JMA'8> ; '=$+'3"#$&"N/( '* /* 2-$#( $'23'4#( /-+,$#( "#0'B> O? +C'<",='JJ'+,$,/+',2'
"* 9&/* /#,'JH'( /* 2#+,-$,"2#+:/ '''
8$&"32-#"$A'P&&"#2"+A'> $++$%=4+/,,+A'
> "%="0$#A'Q/<'R2-DA'O="2A'; 24,='
8$-2&"#$A'$#( 'S"-0"#"$'$-/',/+,"#0'$'
%$9",$,/( '3"#$#%"$&'$&"0#* /#,'* 2( /&T''
82&2-$( 2'"+',/+,"#0'$'* $#$0/( '3//L
32-L+/-. "%/'B! ! ; C'3"#$#%"$&'$&"0#* /#,'
* 2( /&T''
U $+="#0,2#'"+',/+,"#0'62,='$'
%$9",$,/( '3"#$#%"$&'$&"0#* /#,'* 2( /&'
$#( '$'* $#$0/( '! ! ; '3"#$#%"$&'
$&"0#* /#,'* 2( /&T'$#( ''
> "##/+2,$'"+',/+,"#0',=/'"#,/0-$,"2#'
23'$( * "#"+,-$,". /'34#%,"2#+'<",=24,'
3"#$#%"$&'$&"0#* /#,E'''
'
B1 1 C'<=2'
-/V4"-/'&2#0L,/-* '+/-. "%/+'$#( '+4992-,+'BWF; ; C'$#( '9-292+$&+'3-2* '+/. /#'2,=/-'+,$,/+'$-/'9/#( "#0'<",='8> ; '
B! "04-/'JCE'''
F="+'"++4/'6-"/3'%2* 9$-/+'D/@'9-2. "+"2#+'23',=/'$99-2. /( '( /* 2#+,-$,"2#+'B+4* * $-"N/( '"#'F$6&/'J'2#',=/'#/X,'
9$0/'<",='$( ( ","2#$&'( /,$"&+'6@'+,$,/'"#',=/') 99/#( "XCE'''
!"#$%&'(
) *+*&', &- . / 0*%+*". / '1%. 2. 0+30'*. '43"#/ '!"/ +/ 5"/ #'+/ 67. %'
46- "/ "0*%+*". / '8. %', $+3'93"#": 3&'; &/ &8"5"+%"&0<'42%"3'=>( ?
1%. 2. 0+3'2&/ 6"/ #'@"*A'BC) 'DE'
F4G
HI
F J
KL
LM
) ,
HNG
O,
OC
OPO9
CL
Q4
N)
R,
SRG
BHGB4
4I4T
4N
F R
F P P4
LO) B
HS
OBG
CHG
C)
CO
CR
NJ
R4G
RORQ
U4
!Q
4Q
PL
14
OJG
OV
OS
C4
C9
BLG
, 9
I R
C,
, B''
CHK'0"#/ &6'@"*A'BC) '*. '"- 23&- &/ *''8"/ +/ 5"+3'+3"#/ - &/ *'6&- . / 0*%+*". / 'D( >'0*+*&0W
1%. 2. 0+3'0$: - "**&6<'@"33'/ . *'2$%0$&'8"/ +/ 5"+3'+3"#/ - &/ *': $*'- +X'2$%0$&'
+6- "/ "0*%+*"Y&'+3"#/ - &/ *''D( '0*+*&W
1%. 2. 0+3'@"*A6%+@/ 'DE'0*+*&0W
O. *'2+%*"5"2+*"/ #'"/ '6&- . / 0*%+*". / 'D=?'0*+*&0'+/ 6', BW
CHK'0"#/ &6'@"*A'BC) '*. '"- 23&- &/ *''+6- "/ "0*%+*"Y&'+3"#/ - &/ *'6&- . / 0*%+*". / 'D( '0*+*&W
! " #$%&''() " *') #*'+, *'- " *'. / 0'! ) '12313450'6 . / . 750'
88%'630594:'! ; *'" <*'. / 0'= , '12313450'>3?@'A. 1B?. ?50'
. / 0'6 . / . 750'88%'630594C'>3?@'0563/ 4?2. ?B3/ 4'. 25'
. 1123D50'B/ '= , C'! ; 'EB?@025E'B?4'6 . / . 750'88%'
123134. 9:'', 99'3?@52'4?. ?54'12313450'A. 1B?. ?50'6 30594:''
%" FG) $&'') - %'8B/ . / AB. 9', 9B7/ 65/ ?'+/ B?B. ?BD5*'%?. ?5'
8B/ . / AB. 9', 9B7/ 6 5/ ?'H23134. 94*'
@??1&IIEEE:A64:73DI- 50BA. 25J- 50BA. B0J
) 3320B/ . ?B3/ I - 50BA. 25J. / 0J- 50BA. B0J
) 3320B/ . ?B3/ I - 50BA. 25J- 50BA. B0J) 3320B/ . ?B3/ J
" KKBA5I8B/ . / AB. 9- 30594?3%L1132?%?. ?54$KK32?4B/ ) . 25)
3320B/ . ?B3/ :@?69*
. / 0'4?. ?5'E5>4B?54:
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