medically fragile young adults in new york state: a population and needs assessment new horizons for...
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Medically Fragile Young Adults in New York State: A Population and Needs Assessment
New Horizons for Children and Young Adults with
Medical Complexity in New York State
November 12, 2015
2Acknowledgements
This work was undertaken on behalf of St. Mary’s Healthcare System for Children
with support from the New York State Office for
People with Developmental Disabilities.
3
Melinda Dutton, PartnerLaura Braslow, Senior Advisor
7 Times Square, New York, NY 10036
[email protected] [email protected]
www.manatt.com
4Introduction
Growing population of children and young adults with medical complexity More children with severe medical needs living longer
Role and capacity of family caregivers changes over time as children and parents age
Need for programs and services for young adults with medical complexity Discontinuity of programs and services as children “age out”
Young adults’ needs are different from those of children or older adults
Shortage of appropriate services and supports in the current NYS landscape
Current project: Gap AnalysisCurrent presentation: Population Profile and Service LandscapeTarget Population: Medically Fragile Young Adults (Age 12-25)
NYS MF Population and Needs Assessment
5Medical Fragility vs. Medical Complexity
What is the difference between Medical Complexity and Medical Fragility? Medically Complex (MC): Multiple technical definitions, but generally based on presence
of certain health conditions regardless of utilization criteria. Children’s Hospital Association estimates 4% of all children and 6% of children on Medicaid have medical complexity.
Medically Fragile (MF): Narrower definition of children with certain health conditions AND demonstrated high need based on utilization history. More likely to be technology dependent or in need of skilled nursing services. Definition used by the NYS Medically Fragile Work Group. 0.6% of children on Medicaid in NYS are medically fragile.
Why focus on Young Adults with Medical Fragility? Especially high need relative to other high need groups, top 10% of medically complex
Significant discontinuities and gaps services for the young adult population
Challenges in transition planning for the population with medical fragility as they age
Unique combination of medical need and social/psychological/developmental need
NYS MF Population and Needs Assessment
6How Many Children and Young Adults with MF Are In NYS Medicaid?
13,200 Children Age 0-20 with MF in NYS Medicaid.* Of these: 7,700 are Age 0-11 (younger children)
2,500 are Age 12-15 (children in need of transition planning)
1,200 are Age 16-17 (children near aging out)
1,800 are age 18-20 (children aging out)
10,700 Young Adults Age 21-36 with MF in NYS Medicaid. Of these: 3,600 are Age 21-25 (recently aged out young adults)
7,000 are Age 26-35 (aged out young adults)
Total of 9,100 are in the “Aging Out” MF population range (Age 12-25)The vast majority of population with MF is or will become Medicaid eligible
NYS MF Population and Needs Assessment
• SOURCE: NYS Medicaid Claims Data provided by NYSDOH via Salient Interactive Miner, July 2014-August 2015. Analysis by Manatt Health. Population estimates reflect a modified version of the methodology used by the NYS Medically Fragile Children Work Group in their February 2013 Report, developed in consultation with NYSDOH and Salient.
7Where do New York’s Medicaid Children and Young Adults with MF Live?
NYS MF Population and Needs Assessment
8What Services do Children and Young Adults with MF Currently Use?
High rate of developmental disabilities / OPWDD eligibility 75% of the “Aging Out” Medically Fragile target population is OPWDD qualified
Children and Young Adults with MF Use Different Home Care and Waiver Svcs Children more likely to use CAH, which is not available over age 18
Children more likely to use PDN services (20% vs. 11% for young adults)
Young Adults more likely to use HCBS Waiver and other care coordination such as MSC
Children and Young Adults with MF Use Similar Levels of Institutional Care Children somewhat more likely to use nursing homes (30% vs. 22% for young adults)
When ICFs are included, the difference in residential treatment between children and adults decreases (30% vs. 27% for young adults)
Children are likely and young adults very unlikely to use pediatric specialty providers (hospitals or nursing homes)
NYS MF Population and Needs Assessment
9How Does Utilization by Medically Fragile Children Change as They Age?
Looking at differences over time for patients with MF can be used to understand how access and use of services changes as children age
Overall, Medicaid PMPM cost/utilization for MF patients increases with age
NYS MF Population and Needs Assessment
Age 0-11 Age 12-15 Age 16-17 Age 18-20 Age 21-25 Age 26-350%
5%
10%
15%
20%
25%
30%
35%
40%
45%
$0
$1,000
$2,000
$3,000
$4,000
$5,000
$6,000
$7,000
$8,000
% Using SNF/ICF
% Using PDN
Total Cost PMPM
10What is the Young Adult MF “Target Population”?
Young Adults with MF and skilled nursing needs are the most in need of appropriate residential treatment options as they age
3,000 Young Adults with MF (33%) in NYS Medicaid use skilled nursing services (SNF or PDN)
2/3 of young adults with MF and skilled nursing needs use nursing homes; 1/3 use PDN
Children are twice as likely to use PDN, and slightly more likely to use nursing homes
2,200 Young Adults with MF using skilled nursing are either about to age out or recently aged out of pediatric programs and services
400 are age 16-17
600 are age 18-20
1,200 are age 21-25
NYS MF Population and Needs Assessment
11How Are Children with MF Cared For As They Age?
Regardless of the specific programs or services used, there are structural differences between how Children with MF and Young Adults with MF are cared for and supported.
Children with MF are typically cared for by their families at home with extensive supports. A smaller number utilize specialty pediatric nursing homes and other residential options.
Key services and supports used for children with MF are not available after Age 18 or 21
Care at Home waiver is not available over Age 18 (including enhanced PDN rates)
Young adults over Age 21 cannot be served by pediatric specialty providers (hospitals and nursing homes)
Young adults over Age 21 lose access to school-based services that support their social and educational development
NYS MF Population and Needs Assessment
12How Do Young Adults with MF Transition As They Age?
Most young adults with MF using skilled nursing services will need these services for their entire lives
Some young adults with MF transition from home or pediatric specialty residential treatment into unsuitable geriatric NH settings
Some families are unable to provide the same level of care in the home as children age
Rate of SNF use increases and PDN decreases as children age, especially after age 25
SNF use rate is 50% higher for adults age 25-36 than for children or younger adults
PDN use rate is 25% lower for adults age 25-36 than for children or younger adults
Pediatric specialty SNFs are not licensed to serve patients over age 21, so those who need skilled nursing but cannot be cared for at home may be cared for in geriatric SNFs due to a shortage of appropriate residential alternatives
Families need additional residential options equipped to meet the medical, social and psychological needs of children as they age
NYS MF Population and Needs Assessment
13Quotes from Key Informant Provider Interviews
“As [children] get older and bigger, clinically they're harder to care for and the parents get older and it can become a problem [to keep children at home]…”
“For some families, there are various circumstances that lead to the fact that they just can't take the child home. Some of that may be due to individual family issues, some of that may be due to housing issues… this is particularly relevant [for poorer families and in the city].“
[Families] are constantly looking for the vacancies [for age appropriate residential settings]. Unfortunately, they are few and far between.”
“The young adults are the hardest to place because they shouldn’t go to adult facilities, and pediatric providers would just have to transition them again…”
NYS MF Population and Needs Assessment
14Quotes from Key Informant Provider Interviews
“There haven't been programs targeted to the population, because a lot of these kids weren't living this long so nobody was really paying attention to the need in terms of making funding available and thinking about what these young adults would need… they need to be able to have things to do during the day, they need to have a life.”
“What we need is a definitive answer [about programs for children aging out] so the children can have quality of life, the families can have a quality of life and it's, I'd say it's a no man's land… I personally do not know how to advise [anyone] other than to make sure… that the parents are thinking about, what do they want to do once the child has aged out?”
NYS MF Population and Needs Assessment
15
Joan E. DaVanzo, PhD, MSWCEO
NYS MF Population and Needs Assessment
450 Maple Avenue East, Suite 303, Vienna, VA 22180
www.dobsondavanzo.com
16
Medicaid Spend per User for Young Adults with Medical Fragility (MF) Varies Greatly by Patient Acuity
Source: Dobson | DaVanzo analysis of NYS Medicaid claims data 9/14-8/15. Data provided by NYSDOH via Salient interactive Miner, custom tabulation by Manatt Health Solutions
* Skilled nursing includes nursing home and private duty nursing services.
Service CategoryMedicaid Spend
Per User (All MF) (n=1,789)
Medicaid Spend Per User (MF, Using Skilled
Nursing*, and OPWDD Eligible) (n=202)
Difference
Inpatient hospital $34,567 $49,328 $14,761 Emergency department $84 $116 $32 Other hospital $3,708 $11,972 $8,264 Nursing home $55,538 $104,094 $48,556 Private Duty Nursing $70,405 $95,574 $25,169Durable medical equipment $3,057 $4,952 $1,895 Pharmacy $5,854 $11,117 $5,263 All home health/waiver services $27,037 $13,442 ($13,595)Capitation $8,631 $9,042 $411
Medicaid Spend Per User, Individuals with MF Ages 18-20 (Sept. 2014 – Aug. 2015)
NYS MF Population and Needs Assessment
17
Characteristics of ‘Community Model’ of Care for Young Adults with MF
The Community Model will be staffed by 24-hour medical personnel with specialized training in patient care for young adults with MF
The 24-hour supervised residential care under the Community Model intends to replace the following services:
Intermediate care facility services
Nursing home care
Private duty nursing (PDN)
All home health/waiver services
Other household and social spending on residential and informal caregiving services
The Community Model is estimated to cost $250,000 per-member per-year (or $20,833 per-member per-month)
NYS MF Population and Needs Assessment
18
Comparison of Community Model Cost to Current Spending for Individuals with MF
Services Per Diem Rate Annual
Nursing Home* $871 $317,915PDN + Waiver Services** $691 $252,288Community Model N/A $250,000OPWDD (enhanced daily group home rate) N/A $230,000OPWDD (standard daily group home rate) N/A $189,500CDPAP (16 hr./day) + Waiver Services*** $456 $166,440CDPAP (8 hr./day) + Waiver Services*** $228 $83,220* Nursing home spending is based on the 2014 NYS nursing home rate for pediatric specialty nursing home.** PDN spending is based on 24 hour PDN care at an hourly rate of $19.20. The hourly PDN rate is calculated by converting the 2013 MFC Work Group Report that shows annual FFS PDN spending for PDN services was $168,068 into an hourly rate. Waiver Services spending represents an additional 50% of PDN services. Total PDN and Waiver Services spending represents the sum of these two components.*** CDPAP is Consumer Directed Personal Assistance Program, and is appropriate for only a subset of lower acuity patients. CDPAP spending is based on an hourly rate of $19, which is the average hourly rate for CDPAP services according to 2015 NYS DOH Personal Care Rates for Consumer Directed services. Waiver Services spending represents an additional 50% of CDPAP services. Total CDPAP and Waiver Services spending represents the sum of these two components.
NYS MF Population and Needs Assessment
19Policy Implications
As the pediatric and young adult populations with MF age, access to Medicaid medical and long-term care services is reduced dramatically—resulting in unmet need and inappropriate placement
The Community Model is expected to provide better care for the population with MF for a lower cost than nursing home and PDN with waiver services, while integrating skilled nursing services not available through OPWDD programs
Individuals with MF are expected to receive high quality, integrated, and age-appropriate care under this model
Individuals with MF have unmet needs that are expected to be addressed under the Community Model, which may improve patients’ quality of life and other health outcome indicators
The services that would be offered under the Community Model could replace or fill in for gaps in services for this vulnerable population
NYS MF Population and Needs Assessment
20Discussion
Thank you!
Questions?
NYS MF Population and Needs Assessment