Health Care Reform: Implications for Children with Special Health Care Needs

♥ 2340 Alamo SE, Suite 102 ♥ Albuquerque, NM ♥ (p) ♥ (f) ♥ Presentation Outline Background on Family Voices Mission Public Policy Health Care Reform In general For CYSHCN How and why to be involved in public policy Discussion and Q&A

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 Structure: Based in Albuquerque, NM National network – membership 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 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” ♥  2340 Alamo SE, Suite 102 ♥ Albuquerque, NM ♥ (p) ♥ (f) ♥

Kaiser Family Foundation Video

Basic Structure of Law 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 cost- sharing; limits on premiums – not based on health status, gender (2014) (cont.)

Basic Structure of Law (cont.) Continuation of State Children's Health Insurance Program (CHIP) until 2015 Expansion of Medicaid to 133% of the Federal Poverty Level (2014); optional now “Patients Bill of Rights” (insurance reforms) 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 ♥  2340 Alamo SE, Suite 102 ♥ Albuquerque, NM ♥ (p) ♥ (f) ♥

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 ( ♥  2340 Alamo SE, Suite 102 ♥ Albuquerque, NM ♥ (p) ♥ (f) ♥

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 ♥  2340 Alamo SE, Suite 102 ♥ Albuquerque, NM ♥ (p) ♥ (f) ♥

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 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 Pre- existing Condition Exclusions 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 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 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: $750,000 until 9/23/11 $1.25 million until 9/23/12 $2 million until 1/1/14 Annual dollar limits prohibited as of 1/1/14

High-Risk Pools (PCIPs) As of July 1, 2010, state or federal high- risk pool (Pre-existing Condition Insurance Plans, PCIPs) available to individuals who are: U.S. Citizens Have been uninsured for at least 6 months Have a pre-existing condition No longer necessary after 1/1/14, when no pre-existing condition exclusions are permitted

Illinois PCIP Illinois has created its own PCIP Features (see handout) Premium: $ Deductible: $2,000 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: or

Coverage for Dependents until Age 26 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 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 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 Law requires insurance plans sold in exchanges (2014) to cover “essential benefits,” which will include, among other benefits: 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 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 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 ♥  2340 Alamo SE, Suite 102 ♥ Albuquerque, NM ♥ (p) ♥ (f) ♥

Families and Professionals as Public Policy Advocates 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! ♥  2340 Alamo SE, Suite 102 ♥ Albuquerque, NM ♥ (p) ♥ (f) ♥

Future of Health Care Reform 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