www.familyvoices.org  2340 Alamo SE, Suite 102  Albuquerque, NM 87106

(p) 888.835.5669  (f) 505.872.4780 

Board of Directors

Joan Christopher

District of Columbia

John W. Foley

New Mexico

Wendy Jones, M.ED., MSW

Maryland

Merle McPherson, MD

Virginia

Mary Marin

Michigan

0DUFLD2·0DOOH\

Nevada

Carolyn Richardson, Ed.D.

New Mexico

Mercedes Rosa

New Jersey

Linda Rowley

Wisconsin

Susan Sherry

Massachusetts

Scott C. Suzuki, JD, MPH

Hawaii

Renee Turchi, MD, MPH

Pennsylvania 

Ruth Walden

New York

Grace Pushparany Williams

Maryland

Executive Director

Sophie Arao-Nguyen, Ph.D.

August 9, 2010

The Honorable Kathleen Sebelius, Secretary

U.S. Department of Health and Human Services

Hubert H. Humphrey Building

200 Independence Avenue, SW

Washington, DC 20201

RE: File Code OCIIO-4150-IFC

Dear Secretary Sebelius:

On behalf of Family Voices, Inc., I would like to submit the following comments on 

the Interim Final Rules (IFR) pertaining to dependent coverage of children to age 26 

under the Patient Protection and Affordable Care Act (ACA). 

Family Voices is a national nonprofit organization of families whose children have 

special health care needs, such as disabilities or chronic illnesses, and the professionals 

who serve them. 7KHRUJDQL]DWLRQ¶VPLVVLRQLVWRDFKLHYHIDPLO\-centered care for all 

children and youth with special health care needs and/or disabilities. Through Family 

9RLFHV¶national network, the organization provides families with tools needed to make 

informed decisions, advocates for improved public and private policies, builds 

partnerships among professionals and families, and serves as a trusted resource on 

health care.

Family Voices is particularly interested in the issue of dependent coverage until age 26 

because it is currently very difficult for young adults with special health care needs to 

obtain insuUDQFHDIWHUDJLQJRXWWKHLUSDUHQWV¶SODQVGXHWRSUH-existing condition 

exclusions. Moreover, young adults with special health care needs may have more 

trouble than their healthier peers in either attending school full-time, thereby 

qualifying for their SDUHQWV¶FRYHUDJHRULQILQGLQJand/or maintaining jobs that offer 

insurance coverage. 

In JHQHUDOZHDUHYHU\SOHDVHGZLWKWKH,)5\RXKDYHLVVXHGWRLPSOHPHQWWKH$&$¶V

extension of parental insurance coverage to children up to age 26. However, we have 

several suggestions about how the regulations might be improved.

Definition of Dependent. First, we urge that you define dependent to include adopted 

children, stepchildren, former foster children, and grandchildren (in cases where 

insured grandparents serve or served as the actual or legal guardians of their 

grandchildren), and other adult children ZKRZRXOGEHFRYHUHGE\WKHLQVXUHG¶VSODQ
if the child were a minor, student, or other dependent otherwise SHUPLWWHGWREHRQDSDUHQW¶V

plan. Defining dependent to include these individuals would be consistent with the intent of the 

law to simply extend the age through which dependents can remain on the plans they were on 

EHIRUH3DJLQJRXW ́

Loss of employer-sponsored insurance. We recommend that the final regulations clarify that 

an adult child can enroll or re-HQUROOLQDSDUHQW¶VLQVXUDQFHSODQwithout having to wait for an 

open enrollment period if the child should lose his/her own employer-sponsored insurance. 

2XURWKHUVXJJHVWLRQVDUHUHODWHGWRWKHIDFWWKDWXQWLOWKHODZDOORZVD3JUDQGIDWKHUHG ́

group plan to exclude from coveUDJHGHSHQGHQWVZKRDUH3HOLJLEOHWRHQUROO ́LQWKeir own 

employer-sponsored plans. Clarifications with respect to this provision could help to avoid 

situations where young adults would be uninsured or underinsured because they are neither in a 

meaningful employer-sponsored plan nor permitted to be enrolOHGLQWKHLUSDUHQW¶VJUDQGIDWKHUHG

plan. 

Delayed employer-sponsored coverage. For individuals with special health care needs, it is 

particularly important to be insured at all times. Therefore, we urge that the final rule clarify that 

a dependent may HQUROOLQRUUHPDLQRQKLVKHUSDUHQW¶VLQVXUDQFHSODQGXULQJDQ\ZDLWLQJSHULRG

WKDWPLJKWEHLPSRVHGXQGHUWKHGHSHQGHQW¶Vemployer benefits package or employer-sponsored 

insurance plan. 

Inadequate employer-sponsored coverage. For individuals with special health care needs, it is 

particularly important that insurance coverage be comprehensive. Accordingly, we recommend 

that the final rule allow a dependent to HQUROOLQKLVKHUSDUHQWV¶JUDQGIDWKHUHGSODQLIWKH

employer-sponsored plan in which the deSHQGHQWLV3HOLJLEOHWRHQUROO ́LVDSODQRIIHULQJRQO\

limited or temporary benefits, such as an accident-only or 3PLQL-PHG ́SODQ. Similarly, the final 

rule should allow dependents to enroll in or remain on WKHLUSDUHQWV¶JUDQGIDWKHUHGSODQVLIWKH

dependent is offered an employer-sponsored plan that has received a waiver from annual cap 

limitations. 

Pre-existing condition exclusions. Almost by definition, individuals with special health care 

needs have pre-existing conditions. Until 2014, the ACA allows group plans to exclude 

coverage pre-existing conditions for up to a year after an individual enrolls. Under current law

(the Health Insurance Portability and Accountability Act), every day that a person spends on a 

qualifying health plan before joining a different plan reduces the amount of time an insurer can 

exclude for a pre-existing condition by an equal number of days. Thus, young adults who were 

DOUHDG\RQWKHLUSDUHQW¶VLQVXUDQFHfor a year would not face a pre-existing condition exclusion. 

However, LIWKHLQGLYLGXDOKDGQRWKDG3FUHGLWDEOHFRYHUDJH ́IRUDWOHDVWD\HDUWKHQWKH\FRXOG

face a pre-existing condition exclusion period. This would clearly run contrary to the intent of 

the law to expand meaningful coverage for the young adult population. Accordingly, the final 

rule should prohibit grandfathered plans from denying dependent coverage unless and until the 

GHSHQGHQW¶VHPSOR\HU-sponsored coverage is comprehensive (i.e., does not have any pre-existing 

condition exclusions.) 
Thank you for your attention to these comments. If you should need additional information, 

please feel free to contact one of our Public Policy Co-Directors, Janis Guerney 

(jguerney@familyvoices.org, or 202-546-0558) or Brooke Lehmann 

(blehmann@familyvoices.org or 202-333-2770). 

Sincerely, 

Sophie Arao-Nguyen, Ph.D.

Executive Director