Passing the Family Opportunity Act in North Dakota

1
Passing the Family Opportunity Actin North
Dakota
Donene Feist Executive Director Family Voices
ND Edgeley, ND (pop. 562) HRSA/MCHB Partnership
Meeting October 2007
2
1st in the countryFOA passed in ND, April 11,
2007

North Dakota Gov. John Hoeven signed SB 2326.
Sponsor State Senators Tim Mathern and Dick
Dever. Elizabeth is the daughter of Roxanne
Romanick, was involved in the legislation and was
present at the ceremony. Photography by
Shannon Wirrenga
3
The Outcome FOA in ND
Financial Eligibility - 200 of the FPL
NET(49,000 children 18) Premiums
- 5 of monthly Gross income Out of pocket
expenses child care costs, medical, taxes
withheld, etc.) SAMPLE 41,300
Family of 4 (ave. ND annual income 53,323 )
117 average estimated monthly
premium Healthcare Benefits Analysis
determines if current out-of-pocket expenses
outweigh cost of buying into Medicaid.
SOURCES 2007 Child Care in the State of
ND U.S. Census Bureau, CPS 2006 Annual Social
and Economic Supplement

4
(No Transcript)
5
Nothing is Easy in ND

• 70 of the 53 counties, are considered frontier
• only 13 cities have a population over 6,000
• Population density 9.3 persons per square mile
• US 79.6 persons per sq mile
• Extreme weather 9 months of the year
• Contributes to isolation and travel
  difficulties
• Summer highs 109 degrees heat indexes
  125 degrees
• Winter lows - 43 degrees wind
  chills of -100 degrees
• ND residents embrace the tradition of the
• frontier spirit with great pride, dignity and
  passion.

6
ND Issues Needs

• 74 Lack access basic health services
• SOURCE Block Grant FY2006
• 4-6 hr drive to urban areas for health care
• Bismarck (pop. 55,532) -- or -- Fargo
  (pop. 90,599)
• Some go to the Twin-Cities in
  Minneapolis
• SSI does not mean automatic Medicaid in ND
• ND is a 209(b) state CT, HI, IN, IL,
  MN, MO, ND, NH, OK, OH, VA)
• Requires separate Medicaid
  application, different requirements.

7
CYSHCN in ND
Prevalence rates are not significantly
different from the national rates by age and
gender. Source DRC, 2006

• 12.4 19,651 / 12.8 nationally
• 6.8 age 0 - 5
• 14.3 age 6 - 11
• 15.3 age 12 - 17
• 14.7 male
• 10.0 females

8
Underserved/Culturally Diverse

• 5 American Indian Reservations
• 2 Air Force Bases
• Religious communities -- Brethrens
  Hutterites/German origin
• Large transient migrant population - agriculture
• Emerging immigrant population
• Kurdish, Arabic, Somali, Bosnian, and
  Vietnamese

9
ND Frontier Spirit Proud Stoic

• Labor Force working mothers - children ages 0-17
• 81.2 vs national 69.1 / 2nd in the country
  (SD is 1)
• ND Kids Count, 2006
• Families of CYSHCN
• 21.8 had to quit their job not take a job or
• greatly change their job due to
  child care for their child.
• DRC 2001
• Poverty
• 24 Children live in poor and near poor
  families
• Over half of the ND 53
  counties, Child poverty rate exceeds the
• state average of 16.8 percent
• ND KIDS COUNT 2006

10
Impact on Family

• Parents who have CYSHCN said .
• 30 Employment was affected
• most said they had given up a paying
  job, accepted a lower paying
• job with more flexibility or
  fewer demands, or had not changed jobs
• because the change leads to
  losing benefits.
• 60 missed one or more days of work
• due to their childs special health
  care need
• 50 they had no paid sick leave or family
  leave

11
Why ND Needed FOA Data on of CYSHCN

• 31.0 have public insurance SCHIP is not
  adequate
• 12.9 have had no insurance in the last 12
  months
• 19.1 needed special services, equipment or
  other
• 24.0 Families experience financial problems
• due to childs health needs
• 22.0 Families not able to pay for financial
  costs
• for their childs health care needs.
• - 66 paid out of pocket
  expenses.
• - 40 amount for out of
  pocket was a financial burden
• DRC 2001

12
Quick Stories - before FOA passes
13
What Would it Take to Get FOA passed?

• Education Getting others interested
• (Family Leaders, Consumers, Families,
  Providers, Legislators, Media)
• Partnerships Joining forces
• Department of Human Services ie Medical
  Services Division, Childrens Special Health
  Services, North Dakota Disabilities Advocacy
  Consortium, Childrens Caucus, Family Voices of
  ND, Protection and Advocacy workgroup which
  included advocacy groups
• Bill sponsors Bipartisan/Senators Fischer, Lee
  and Mathern, Representative Price and Schneider
• Department Buy-In Medicaid had heard much about
  the FOA through many avenues and through interim
  legislative committee as did many of the
  legislators. Department of Human Services
  instrumental in OAR. Medical Needs Task Force
  met before session which helped get folks on the
  same page
• Staying on the Radar public, families,
  legislators

14
Previous Legislation that Sets the Stage - 01

• 2003 Home Community Based
  Services
• HB 1148 Relating to personal care services
  for eligible medical assistance recipients who
  are residing in their own homes and makes
  permanent the personal care option for
  individuals eligible for the Medicaid Program.
• It required the department to submit a waiver
  that would permit disabled and elderly
  individuals to direct their own care. (Passed)

15
Previous Legislation that Sets the Stage - 02

• 2005
• HCR 3054 A concurrent resolution directing the
  Legislative Council to study state programs
  providing services to children with special
  health care needs to determine whether the
  programs are effective
• 2005
• Senate Bill No. 2395. Bill created a program for
  children with Russell Silver Syndrome and
  directed the DHS to apply for a waiver to provide
  in-home services to children with extraordinary
  medical needs who otherwise require
  hospitalization or nursing facility care.

16
Education Information Not Lobbying

• Making the Case using State Data
• - Insurance - Chart Book, 2006, Catalyst Center
  
• - National CSHCN Survey, 2001, Data Resource
  Center
• - Needs Assessment for proposed waiver, Medical
  Needs Task Force, Dept. of Human Services/Private
  insurance 2006
• - Family Unmet Needs and Costs, FV-ND Survey,
  2006

17
Education Information Not Lobbying

• Educating through Information packets emails
• - Fact sheets (easy to read and
  understand one pagers)
• - Family Stories (booklet w/pics,
  putting a face to the issue)
• - Promotional materials (events, resources for
  addl info)
• - Informational alerts (email, fast track,
  calls/visits to State House)
• - Testimonies (organized and
  not duplicative)

18
The Roller Coaster Ride Ups Downs

• December/ 2006 Governor
  OAR list
• December 2006-January 2007 Bill sponsors
• January 22 2007 Senate
  testimonies, media blitz
• February 9, 2007 Passed
  in the Senate
• February 2007-March 2007 House complicated
• March 8, 2007 Bill
  in trouble
• March 2007
  Families rallied, sent letters,
  
• made calls,
  walked halls
• Jan-March 2007 Alert
  statewide/providers, families
• March 29, 2007 The Vote

19
Blood, Sweat Tears Winning Compromising

• OUTCOME Bill passed and signed, April 11, 2007
• - 200 of FPL (family leaders had
  hoped for 300 FPL)
• for waiver in addition to the Medicaid Buy-In
  included in the FOA Bill
• Monitoring Needed Tracking of denials and income
  
• Education Outreach maximized thru Partnerships
• On-going education - Grassroots/families
• (about the program, application process and
  paperwork)

20
Advice with Hindsight Tips for Title V Leaders

• Consumer Leadership Organizations are Allies
• Conduct Annual Needs Assessment
• - checking the pulse at the community level
  (tracking intake calls/emails)
• - Access to families at the Community Level
• -Informed consumers are terrific allies
  (freedom of speech-no job jeopardy)
• Keeping a Face to the Issue
• - Short IMPACT stories with pictures
• - Capture ROI (return on investment) model.
  ie. Families can pay taxes

21
Other Implementation Considerations

• FTE may be needed
• It takes time to hire and train staff meanwhile
  others carry the work load
• Need to add new eligibility group so changes
  required to the state MMIS system
• Multiple competing issues after a session can
  make implementation difficult, can mean some lag
  time.
• Ongoing communication needs to transpire with
  family organizations and among staff before,
  during and after implementation to assure
  everything is working properly

22
Quick Stories - FOA passes
23

• Family Voices of ND
• Donene Feist
• Executive Director
• fvnd_at_drtel.net / www.fvnd.org
• 701-493-2634