Health Care Reform:
Implications for Children
with Special Health Care
Needs
Presentation Outline
• Background on Family Voices
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Mission
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Public Policy
• Health Care Reform
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In general
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For CYSHCN
• How and why to be involved in public
policy
• Discussion and Q&A
www.familyvoices.org ♥ 2340 Alamo SE, Suite 102 ♥ Albuquerque, NM 87106
♥ (p) 888.835.5669 ♥ (f) 505.872.4780 ♥
Family Voices
Mission: Family Voices aims to achieve
family-centered care for all children and
youth with special health care needs
and/or disabilities.
Family-Centered Care
Family-Centered Care:
Because families are at the center of a
child's life, they must be equal partners in
decision-making and all aspects of the
child's care. Family-centered care is
community-based, coordinated, culturally
and linguistically competent, and guided by
what is best for each child and family.
Family Voices
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Structure:
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Based in Albuquerque, NM
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National network – membership
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State-Affiliated Organizations
Provides information and tools to families
to help them make informed decisions
Works to build partnerships between
professionals and families
Advocates for improved public and private
policies
Family Voices and Public Policy
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Public Policy Team in Washington, DC
Work in coalition with other national groups
(formal and informal)
Families serve as public policy advocates
(more on this later)
The Health Care Reform Laws
•The Patient Protection and Affordable Care
Act (PPACA) – enacted March 23, 2010
•Health Care and Education Affordability
Reconciliation Act – enacted March 30, 2010
•Now referred to collectively as the
Affordable Care Act or “ACA”
www.familyvoices.org ♥ 2340 Alamo SE, Suite 102 ♥ Albuquerque, NM 87106
♥ (p) 888.835.5669 ♥ (f) 505.872.4780 ♥
Kaiser Family Foundation Video
Basic Structure of Law
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Continuation of employer-based health
insurance, with certain standards
State-based “Exchanges” through which
uninsured individuals can purchase
insurance that meets certain standards
(2014)
Subsidized premiums; limits on costsharing; limits on premiums – not based on
health status, gender (2014)
(cont.)
Basic Structure of Law (cont.)
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Continuation of State Children's Health
Insurance Program (CHIP) until 2015
Expansion of Medicaid to 133% of the
Federal Poverty Level (2014); optional now
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“Patients Bill of Rights” (insurance reforms)
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Most provisions effective 2014; some now
2010 Provisions
•Maintenance of Effort (MOE) in Medicaid
and CHIP
•Option to Expand Medicaid to New
Expansion Populations (up to 133% of FPL)
•Creation of a High-Risk Health Insurance
Pools (PCIPs) as of July 1, 2010
•Prohibition on Lifetime Caps and
Rescinding Coverage; Restrictions on
Annual Caps
2010 Provisions Continued…
•Eliminating Pre-Existing Condition
Exclusions for Children under age 19
•Coverage of Adult Children until age 26
•Coverage of Preventive Health Services at
no Charge (“Bright Futures”)
•Strengthening Community Health Centers
www.familyvoices.org ♥ 2340 Alamo SE, Suite 102 ♥ Albuquerque, NM 87106
♥ (p) 888.835.5669 ♥ (f) 505.872.4780 ♥
2010 Provisions Continued…
•Re-Establishing Funding for F2Fs!!!
•Prevention and Public Health Fund
•Maternal, Infant and Early Childhood Home
Visiting Programs
•Federal “portal” (website) for information
about coverage options
(www.healthcare.gov)
www.familyvoices.org ♥ 2340 Alamo SE, Suite 102 ♥ Albuquerque, NM 87106
♥ (p) 888.835.5669 ♥ (f) 505.872.4780 ♥
Later Important Provisions to Note
•Medicaid Expansion- 133% by 2014
•State Health Insurance Exchanges/Benefits
•Health Homes in Medicaid
•Home and Community-Based Services
•Grants for Navigators
•Medicaid for former foster children up to
age 26
•Insurance reforms
www.familyvoices.org ♥ 2340 Alamo SE, Suite 102 ♥ Albuquerque, NM 87106
♥ (p) 888.835.5669 ♥ (f) 505.872.4780 ♥
Provisions of special importance to Children
and Youth with Special Health Care Needs
(CYSHCN)
Elimination of Pre-existing
Condition Exclusions for Children
Under Age 19
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Effective for plan/policy years beginning on
or after September 23, 2010
Applies to both issuance of insurance and
coverage of services related to pre-existing
conditions
Does not apply to individual grandfathered
plans (in existence 3/23/10)
Premiums can be higher
Implications of Ban on Preexisting Condition Exclusions
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Some insurers are no longer issuing new
child-only plans
Should not affect current child-only plans
HHS has told insurers they can limit
enrollment to certain open enrollment
seasons, as permitted under state law
Insurers may take other measure to
counter potential adverse selection
Prohibition on Rescissions
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For plans/policies effective on or after
9/23/10, insurers may not rescind policies
based on minor errors in the application
Policies may be rescinded if there was
intentional fraud or misrepresentation of
material facts
Restrictions on Lifetime and
Annual Dollar Limits
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For plans/policies effective on or after
9/23/10, insurers may not impose lifetime
dollar limits on the amount they will cover
From 9/23/10 until 1/1/14, annual dollar
limits must not be set below certain
thresholds:
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$750,000 until 9/23/11
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$1.25 million until 9/23/12
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$2 million until 1/1/14
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Annual dollar limits prohibited as of 1/1/14
High-Risk Pools (PCIPs)
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As of July 1, 2010, state or federal highrisk pool (Pre-existing Condition Insurance
Plans, PCIPs) available to individuals who
are:
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U.S. Citizens
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Have been uninsured for at least 6 months
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Have a pre-existing condition
No longer necessary after 1/1/14, when no
pre-existing condition exclusions are
permitted
Illinois PCIP
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Illinois has created its own PCIP
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Features (see handout)
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Premium: $111-526
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Deductible: $2,000
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Out-of-Pocket Limit: $4,350 for medical (including
$2,000 deductible), $1,600 for pharmacy; maximum
OOP limit of $5,590 [sic]
For more information:
http://insurance.illinois.gov/IPXP or 877-210-9167
Coverage for Dependents until
Age 26
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Parents can keep their children on their
insurance plans until the child reaches age
26 (just child; not grandchild)
Child need not be a “dependent” for tax
purposes
Applies even if adult child is married and/or
does not live with parents
Does not apply to “grandfathered” group
plans if child has offer of insurance
coverage from an employer
No-Charge Preventive
Services
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For new health insurance policies as of
9/23/10, a full range of preventive services
will be covered pursuant to the “Bright
Futures” recommendations for children
There may be no copayments, coinsurance
or deductibles applied to preventive
services
Appeals and Reviews
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Families can appeal denials of coverage,
followed by an external review
Pursuant to interim final regulation,
coverage would continue pending review
Decision required within 24 hours for
urgent care
Need to specify that pediatric experts
should be involved in appeals and reviews
Essential Benefits Package
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Law requires insurance plans sold in
exchanges (2014) to cover “essential
benefits,” which will include, among other
benefits:
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Habilitation and rehabilation and devices
Mental health and substance abuse disorder services
(including behavioral health treatment)
Pediatric services, including oral and vision care
Preventive and wellness services and chronic disease
management
Family-to-Family Health
Information Centers
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F2F HICs are statewide, family-led
information and referral centers that
provide information on health care and
insurance to families of children/youth with
special health care needs, such as
disabilities or chronic medical conditions.
Many are state affiliates of Family Voices
Illinois F2F HIC is based at The Arc of
Illinois (Faye Manaster)
Family-to-Family Health
Information Centers
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ACA reauthorized and funded the program
at the previous level of $5 million per year
for federal fiscal years 2010, 2011 and
2012
Provides about $97,500 per center (one in
each state and DC)
Advocacy will be needed to get an
extension and additional funding
Reform at the State Level: the
“what” and “how”
Examples of state based options:
•Expanding Medicaid
•High-Risk Pools (PCIPs)
•Community First Choice Option
•Creation of State Ombudsman's Office
•Creation of Exchanges
www.familyvoices.org ♥ 2340 Alamo SE, Suite 102 ♥ Albuquerque, NM 87106
♥ (p) 888.835.5669 ♥ (f) 505.872.4780 ♥
Families and Professionals as
Public Policy Advocates
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You are already advocates for your
children and patients
Public Policy Advocacy –
Who, what, when, where, why, how?
(see handout)
Don't forget – you are the constituents, the
“public”!
How You Can Get Involved
•Know your state government officials, e.g.,
Insurance Commissioner, legislators
•Join relevant coalitions
•Sign up for action alerts (federal and state)
•Submit comments on proposed regulations
(federal and state)
•Educate your network
•Be there and be heard!
www.familyvoices.org ♥ 2340 Alamo SE, Suite 102 ♥ Albuquerque, NM 87106
♥ (p) 888.835.5669 ♥ (f) 505.872.4780 ♥
Future of Health Care Reform

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Some states are suing federal government
to prevent implementation
Republicans are talking about repeal
legislation, blocking appropriations
Probably okay for next two years, then ???
Handouts
Q & A and Discussion