» Public Policy and Advocacy at Family Voices
By communicating with congressional and administration officials, Family Voices strives to ensure that federal policies 1) advance the health and well-being of CYSHCN and their families, 2) promote family-centered health care, and 3) reflect the voices of families.
Family Voices also provides information about current policy proposals that could affect CYSHCN and their families, the policy-making process, and how families can influence policy decisions. Among the many issues on which Family Voices focuses:
- Continuation of federal support for Family-to-Family Health Information Centers, which help families of children and youth with special health care needs to navigate the complex health system (see policy position statement below);
- Affordable Care Act;
- Children’s Health Insurance Program (CHIP);
- Maternal and Child Health Block Grant;
- TRICARE (for military families);
- Supplemental Security Income;
- Support for family caregivers.
Family Voices collaborates with national child health and disability organizations, such as the Consortium for Citizens with Disabilities, The Arc, Autism Speaks, the American Academy of Pediatrics, and other groups.
» Get the Latest National Policy Information and Action Alerts
The Family Voices Policy Team authors the Washington DC Update, a weekly informational newsletter that summarizes the latest national policy activity relevant to CYSHCN and their families. It also includes other relevant information and resources from the field. We have a separate email distribution list for policy-related action alerts to which we send specific recommendations for advocacy on urgent policy issues affecting CYSHCN and their families. Click here to subscribe to the Washington DC Update newsletter.
» Family Voices Policy Priorities and Positions
Separation of Immigrant Families
As a national nonprofit organization that advocates for the health and well-being of children and youth with special health care needs (CYSHCN) and their families, Family Voices is extremely concerned about the separation of immigrant children from their families because of the dangers it poses for children with pre-existing special health care needs and the strong likelihood that it will harm the health of all of the separated and detained children.
Children and youth with special health care needs include those with medical conditions, mental health challenges, and physical, developmental or intellectual disabilities. These range from the apparent (e.g., cerebral palsy or other significant physical or intellectual disabilities) to the invisible, subtle, or intermittent (e.g., autism, anxiety disorders, epilepsy, and depression).
Given the prevalence of CYSHCN in the United States – about one in five children– it is inevitable that some of the immigrant children now in custody of the federal government have special health care needs.
These children are particularly vulnerable to harm when separated from those familiar with their conditions and how to care for them. They may need vigilant monitoring, regular medications, specific medical interventions when they experience a crisis (such as a seizure or asthma attack) or the calming, supportive presence of their parent when suffering from pain or an episode of anxiety.
Given the conditions under which immigrant children are being housed, it seems unlikely that the facilities or personnel are equipped to provide the care that is essential for children with special health care needs.
Moreover, all of the immigrant children who have been separated from their parents will have suffered psychological trauma. The younger the age of a child, the greater the impact of this trauma. As stated by the president of the American Academy of Pediatrics, “…highly stressful experiences, like family separation, can cause irreparable harm, disrupting a child’s brain architecture and affecting his or her short- and long-term health. This type of prolonged exposure to serious stress – known as toxic stress – can carry lifelong consequences for children.”
All of the immigrant children, parents, and other caretakers affected by family separation will need help recovering from the trauma they have experienced.
For all of these reasons, we implore the government to:
• Ensure that all detained children are overseen by someone who is capable of identifying children with special health care needs and has the capacity to arrange for their timely and appropriate treatment while in custody;
• Reunite all children with their families as soon as possible, with a special focus on those with special health care needs and the youngest children; and
• After children and families are reunified, provide them with immediate medical and psychological evaluation and treatment, connect them with appropriate providers for ongoing care as needed, and refer them to organizations that can provide additional support and information in a linguistically and culturally appropriate manner, such as federally funded Family-to-Family Health Information Centers and other community-based organizations.
Family-to-Family Health Information Centers (F2Fs)
Family-to-Family Health Information Centers (F2Fs) are family-led centers providing support to families of children and youth with special health care needs (CYSHCN) and helping them to navigate the health care system so their children can get the care they need. The federal F2F grant program was created on a bipartisan basis in 2006 to provide funding for F2Fs. Since 2009, when the program was fully phased in, there has been one F2F in each state and the District of Columbia. Thanks to a 2018 amendment to the program, now there are also F2Fs in American Samoa, Guam, Puerto Rico, the Northern Mariana Islands, and the U.S. Virgin Islands, plus three F2Fs dedicated to serving American Indian and Alaska Native families. The federal grant for each F2F is $96,750 per year. Without enactment of an extension law, funding will expire on September 30, 2019.
- Family Voices strongly supports Family-to-Family Reauthorization Act of 2019 (R. 2822), sponsored by Representatives Mikie (Michelle) Sherrill (D-NJ) and Fred Upton (R-MI), and the Supporting Family-to-Family Health Information Centers Act (S. 1647), sponsored by Senators Chuck Grassley (R-IA) and Robert Menendez (D-NJ). Both bills would extend funding for F2F program for an additional five years, through federal FY 2024, at the current funding level of $6 million per year. For more information on the legislation, see the Resources page.
Medicaid – structure and funding
Many children and youth with special health care needs rely on Medicaid to cover their expensive medical treatment, medications, equipment, therapies, and other services and supplies. Some Members of Congress have proposed changing Medicaid’s federal funding mechanism into a block grant or capped per capita payment. Under either system, states will receive less federal funding than they would under current law, which will force them to make up the funding shortage with their own funds or, more likely, cut Medicaid benefits, reimbursement to providers, and/or eligibility for the program, thus hurting CYSHCN and their families.
- Family Voices opposes turning the Medicaid program into a block grant program or imposing per capita caps on federal matching payments to states.
Medicaid – waivers
Recently, states have been granted waivers allowing them to institute work requirements for Medicaid beneficiaries, reduce the retroactive eligibility period, and make other significant changes to the program.
- Family Voices opposes waivers that will have the effect of reducing Medicaid eligibility, enrollment or coverage, or increasing out-of-pocket expenses for Medicaid beneficiaries.
The Affordable Care Act (ACA)
Children and youth with special health care needs and their families have benefited greatly from the Affordable Care Act, particularly its ban on pre-existing condition exclusions, ban on annual and lifetime coverage limits, Medicaid expansion, and provisions allowing young adults to stay on their parents’ health insurance plans and former foster children to get Medicaid coverage until age 26.
- Family Voices opposes legislation to repeal or amend the Affordable Care Act (even with a delayed effective date) unless the amendments would maintain or improve the health insurance coverage, access to health care, and consumer protections now provided by the ACA.
- Family Voices supports legislation to stabilize the health insurance market and control increases in insurance premiums.
- Family Voices opposes regulatory actions that would have the impact of reducing access to affordable insurance for individuals with pre-existing conditions or others.
» Key Congressional Health and Education Committees
Relevant Committees of the House of Representatives
- Appropriations provides “discretionary” spending,** appropriating up to the amount of funding authorized by “authorizing” legislation for a specific agency, program or purpose (e.g., the CDC and its various centers; IDEA; Maternal and Child Health Block Grant). There are appropriations subcommittees responsible for specific government departments and agencies (e.g., the Labor, Health and Human Services, Education and Related Agencies Appropriations Subcommittee). The reports issued by the subcommittees set forth the details of how the money should be allocated (line items for specific programs) and policy directions to the departments. Website: appropriations.house.gov.
- Budget develops a federal budget resolution which provides the amount allotted for appropriations (“discretionary spending”) and targets for increases or decreases in “entitlement spending” (e.g., for Medicare, Medicaid, Social Security), often assuming or recommending the policy changes that would result in those spending targets (e.g., make Medicaid a block grant program or provide a voucher alternative to Medicare). The budget resolution is often referred to as a “blueprint” for spending; it does not have the force of law. Website: budget.house.gov
- Energy and Commerce oversees Medicaid, Medicare Part B, the Public Health Service Act, and Title V of the Social Security Act (including Family-to-Family Health Information Centers (F2Fs) (authorizing legislation and funding)* and Maternal and Child Health Block Grant authorizing legislation (but not MCH block grant funding). Website: energycommerce.house.gov.
- Ways and Means oversees parts of Medicare plus Social Security, Supplemental Security Income (SSI), Social Security Disability Insurance, child welfare, and Temporary Assistance to Needy Families (TANF), and is responsible for tax law. Website: waysandmeans.house.gov.
- Education and the Workforce oversees education, including the Individuals with Disabilities Education Act. Website: edworkforce.house.gov.
** A note about “discretionary” versus “mandatory” spending. There are basically two broad federal spending categories. “Discretionary” spending is provided each year through appropriations legislation (sometimes called spending bills). The appropriations limit for a given program, if any, is established by the program’s “authorizing” legislation. Often the amount appropriated is less than the full amount authorized. Authorizing legislation may expire after a certain number of years, so some programs must be reauthorized. “Mandatory” spending does not go through the appropriations process. For most “entitlement” programs (e.g., Social Security, Medicare, and Medicaid) the actual spending level is determined by the law that authorizes the program. For example, an expansion of Medicaid eligibility will lead to more spending; the exact amount will depend on how many people enroll and what services they use. There are also mandatory-spending programs that are set at a certain amount, such as the F2F program. With these mandatory programs, the authorizing legislation automatically triggers the funding. Most grant programs are discretionary, meaning funding for them must be appropriated each year. Sometimes congressional staffers get confused about F2F funding because it is mandatory rather than discretionary.
Relevant Committees of the Senate
- Appropriations – see description under Committees of the House. Website: appropriations.senate.gov.
- Budget – see description under Committees of the House. Website: budget.senate.gov.
- Finance oversees Medicaid, the Children’s Health Insurance Program (CHIP), Medicare, parts of the Affordable Care Act (ACA), Maternal and Child Health Block Grant authorizing legislation (but not MCH block grant funding), Social Security, SSI, Social Security Disability Insurance, child welfare, and Temporary Assistance to Needy Families (TANF), and is responsible for tax law. Website: finance.senate.gov.
- Health, Education, Labor, and Pensions (HELP) oversees education (including IDEA), public health, health insurance (ERISA), parts of the ACA, health privacy (HIPAA), the Americans with Disabilities Act, and many health- and education-related grant programs. Website: help.senate.gov.
» Contact and Visit Your Members of Congress: a Step-by-Step Guide
Reminder: Federal Resources May Not Be Used for Lobbying
Remember, federal resources may not be used for lobbying, which would include asking that a Member of Congress support legislation to extend funding for the F2F program. Thus, if you are visiting a Member of Congress (or their staff) in your capacity as an F2F employee, you must keep your conversation strictly educational. If some of your salary comes from unrestricted funds, and it is okay with the organization you work for, you can lobby in another professional capacity, OR you can lobby in your personal capacity. In the latter case, you should use your home or cell phone to call congressional offices, leave your personal/cell contact numbers, and use your personal email address. It is okay to say that you work at the F2F, but stress your personal interest as a constituent parent and, if applicable, someone who benefited from F2F services. Again, it is fine to visit a congressional office in your capacity as an F2F director/employee, as long as you do not ask that a Member take a position on legislation or funding. Otherwise, you should visit in your personal capacity.
How to Find Your Members of Congress and Information about Legislation
Everyone is represented in Congress by one Representative, who represents a congressional district, and two Senators who each represent the entire state.
To call your Members of Congress: You can reach any member of the House or Senate (“Member”) through the U.S. Capitol Switchboard at (202) 224‑3121. Via an automated or human operator, you can provide your zip code to find out who your Representative and Senators are and be connected to their offices. You can also reach committee offices through this number.
Members’ websites: To contact or get information about a particular Member of Congress, it is helpful to visit their website. The websites have bios, news, positions on issues, contact information for DC and local offices, a form for sending a message, and instructions for requesting an appointment with the Member. Most Members also have Facebook, Twitter, and other social media accounts.
In general, the website of a Member of Congress is www.LASTNAME.house.gov and www.LASTNAME.senate.gov. There are a few Members with the same last names so some of them use the first name as well as the last.
To find your Representative (House Member) go to www.house.gov. Enter your home zip code on the upper right corner of the page. You can then go to your Member’s website, which provides contact information. You can also search for Representatives by name or state.
To find your Senators, go to www.senate.gov. You can then go to their websites, which provide contact information.
The easiest way to find your state’s entire congressional delegation (all House and Senate Members), is to go to www.contactingcongress.org. You can also find your own Representative (House member) on that site by entering your zip code. This website has the phone numbers and addresses of all of the Members’ offices, and links to their social media, but does not link to their websites. It also has information about ACA and Medicaid enrollees in the state and the Rep. or Senator’s vote on the ACA, if applicable. This website also has information on House and Senate committees.
To find bills, resolutions, and committee reports, go to www.congress.gov. For appropriations bills, it is easiest to click on the “appropriations” link on the right side of the homepage. Be sure to choose the fiscal year you are interested in.
How to Schedule an Appointment with a Congressional Staffer
Call the DC office: Telephone calls are taken by a staff assistant or receptionist. Introduce yourself as a constituent and provide the name of your organization. And ask for the name of the LA (Legislative Assistant) who handles health issues. If they are not available and you are offered their voicemail, ask if you could get the staffer’s email address instead. If the receptionist will not provide it (many offices have a policy against doing so), ask for the spelling of the health LA’s first and last names before being transferred to voicemail. With that information, you can email the staffer after you leave your voice message (see below).
If you get through to the staffer: Explain that you are a constituent coming to (or in) Washington DC and would like to meet with them. Let them know the dates and times you are available. Briefly explain what you would like to meet about (e.g., the federally funded F2F in your state, Medicaid, CHIP, ACA) and why these issues are of interest to you (you are a parent, work at an F2F). Ask them for their email address and whether there is a phone number where you can reach them in case of a last-minute scheduling problem.
Voicemail message: Same as above but leave your cell phone number and email address (be sure to speak slowly and repeat the information).
Email message: Even if you leave a voicemail, you should email as well. State who you are and the purpose of your visit (as above) including all possible dates and times you are available to meet. Include your home address so that the staff knows that you reside in the Senator’s state/Representative’s district or state. The following are the formats for staff email addresses.
Senate Staff = firstname.lastname@example.org — e.g., email@example.com (staffer Tom Jones working for Senator Smith)
House Staff = firstname.lastname@example.org — e.g., email@example.com.
Try again if you don’t hear back: You may need to email or call again if you do not hear back within several days. Do not be discouraged if the staffer is unresponsive; staffers are usually swamped.
Once you get an appointment: Follow up with an email to the staffer to confirm the date and time of the meeting. Provide your cell phone number in case they need to change the appointment at the last minute (common on Capitol Hill). Attach some basic educational information about the issue(s) you wish to discuss.
Additional info about scheduling:
- If possible, visit a Member’s office with other people from your state/district. Make sure that all the people from your state or district ask for only ONE meeting with each office. (You may need to split up to accommodate schedules if you are visiting more than one staffer/Member.)
- If possible, schedule meetings at least 30 minutes apart if they are in the same office building, 45 minutes apart if they are in different office buildings on the same side of the Capitol (House or Senate), and 45 minutes to one hour apart if they are on the other side of the Capitol. Each meeting will probably take about 20-30 minutes, and you need time to travel between offices. Plan to arrive at the office building at least 15 minutes before your first appointment in case there is a line to get through security. Once you are in one of the buildings on either the House or Senate side of the Capitol, you can walk underground to other buildings on the same side without a security check, but if you go outside, you will have to go through security again.
Before Coming to DC
If you get an appointment, you will need to bring some materials from home. Please remember to bring your business cards, as the typical Hill meeting begins with trading cards. For example, if you are meeting about Family-to-Family Health Information Centers, bring the following (in rough priority order):
- A fact sheet or pamphlet about your state’s F2F.
- Some case stories to illustrate the types of challenges families face and how your F2F helps them, and some testimonials if you have them.
- Info about your state’s CYSHCN population, which you can get in printer-friendly form from the Catalyst Center website at http://chartbook.cahpp.org/statedata.
- A sample intake form, if you have one, so you can leave it for the office if they need your assistance in helping constituents.
- Photos of your children and other children and families.
If you are not able to put together all the materials mentioned above, don’t worry. You can save some information to send with your post-visit thank-you email.
And last but not least… Bring comfortable shoes for walking the hard marble “halls of Congress.”
Before the Meeting
If you have time, it is a good idea to check the bio and other material on the websites of the Members of Congress you will be visiting to see if they have a special interest in a certain health or medical issue, are in a relevant caucus, or serve on a relevant committee. Each member has a website at lastname.senate.gov or www.lastname.house.gov. (If there are two Members with the same last name, and you get the wrong one, add the first name, e.g., www.kevinbrady.house.gov.) Or you can access Members’ websites via www.senate.gov or www.house.gov.
Tips for Conducting a Meeting with Members of Congress or their Staff
[These tips apply to all Hill visits but relate specifically to visits about Family-to-Family Health Information Centers.]
- Be prompt. It might take as much as 20 minutes or so to get through security to enter an office building. (See below about using the tunnels to avoid multiple security checks.) Note: Do not be put off or feel insulted if you have to meet in the office waiting room, or even in the hallway. Congressional offices are short on conference rooms.
- Identify a lead speaker for a group. If more than one person is attending the meeting, decide ahead of time who will take the lead in the conversation (introductions, why you are there), and make sure someone is designated to make any “ask” (e.g., to support F2F funding) if no one else has done so before you are about to leave.
- Get the staffer’s business card or name and contact information; give them your business card.
- Emphasize your most important points early in the meeting. Staffers usually don’t spend more than 20-30 minutes in a meeting and sometimes get interrupted.
- Be aware that the staffer may not have any background information/knowledge. At the beginning of your discussion, ask the staffer if they know anything about Family Voices, their state’s F2F or the federal F2F program. Most will not have this knowledge, so be prepared to give a brief overview.
- Bring information about your state’s CYSHCN and your F2F. Materials to bring include pamphlets or fact sheets about your organization and F2F — data on number of families served, a newsletter, a pamphlet with photos if you have one, a sample of information you provide to families; a page or two of paragraphs describing different family situations and how the F2F helped; information about the number of CYSHCN in your state and their sources of insurance; and documents about legislative issues to be discussed (Family Voices will handouts on issues but you may want to customize them for your state.)
- Make the meeting personal and memorable. The most important piece of information you can provide is YOUR story and other family stories. Begin with information about your child and family and why you care about the F2F, and relay stories of the people you help at your center. Keep your comments brief – let the staff member guide you to elaborate if they have the time.
- Be direct in making your specific request (e.g., to cosponsor a bill), if you have one, but do not expect a direct answer. Most likely, the legislative assistant (LA) with whom you meet will not be able to make a commitment for their Member on the spot.
- Let them know that F2Fs can help congressional offices with constituents’ problems.
- If you do not know the answer to a question, just tell the staffer that you will get back to him/her about it, and/or provide the contact information for the policy team. (See next page.)
- Thank them for their time and let them know you will follow up. You might want to ask them when would be a good time for you to follow up – “next week, perhaps.”
- Ask if it would be okay to put them on your mailing list for newsletters, etc.
The two most important actions you can take are to:
- Tell your personal story and that of others helped by your F2F.
- Follow-up – Email a thank you and reiterate your willingness to provide any necessary information or to be available to answer any questions. After your thank-you email, try to stay in touch to make sure you are on the Member’s radar screen. (You could send them newsletters, or news stories, or any other information you think might help them to understand what your organization does and the needs of CYSCHN in your state.)
After the Meeting
As soon as possible, send a “thank you” email or note.
If you work for an F2F:
- Put the person you met with on your email list to receive newsletters.
- Send your contact information and referral forms to local legislative caseworker
» Recent Policy-Related News
Following are the most recent news posts from the Washington Update and Policy Alerts. Click here to receive the weekly Washington Update newsletter and/or periodic Policy Alerts in your inbox.
Medicaid/CHIP News: Guidance on Providing EPSDT Services for Children in “Institutions for Mental Disease” (IMDs)
On June 20, the Centers for Medicare & Medicaid Services (CMS) released an Informational Bulletin that describes the requirements of section 12005 of the 21st Century Cures Act (the Cures Act) -- “Providing EPSDT Services to Children in IMDs.” This section of the...
Rescissions As reported in last week’s Update, the Senate voted not to take up the bill that would have rescinded funds previously designated for the Children’s Health Insurance Program (CHIP) and other programs. Because the legislation was subject to a deadline of...
As reported in last week’s Update, the House is expected to take up a broad immigration bill that is considered to be a compromise among “Republicans of all perspectives.” See the press release. The Border Security and Immigration Reform Act of 2018 (H.R. 6136) would...
As explained in last week’s Update, the president issued an Executive Order on June 20 to end the practice of separating children and their families when they enter the U.S. See The Executive Order Trump Claims Will End Family Separation, Explained (Vox, 6/21/18). The...
Last week the White House announced a plan to reorganize several departments of the federal government. See the White House fact sheet. Under the proposal, the Departments of Education and Labor would be merged into a single Department of Education and the Workforce....
UPCOMING WEBINARS AND CALLS Estate Planning for Special Needs Wednesday, June 27, 12:00-1:15 ET The Parents’ Place of Maryland (Maryland Family-to-Family Health Information Center) Ticket to Work: Support on Your Journey to Financial Independence Wednesday, June 27,...