Our Progress

Last week, we had contacted several key stakeholders who responded to us through e-mail. A dialogue has begun and will hopefully continue through the progression of this bill. According to our action plan, we have discussed the bill with other nursing majors in our program in order to make others aware. The main purpose of the action plan was to get the word out and open lines of communication which has successfully begun. We hope to continue and remain in touch with those interested in the bill through continued e-mail and this blog. Unfortunately there has been no new advancements on this bill and it is still on the docket for the House Committee on Energy and Commerce. We hope that the information we share through this blog concerning the Medically Fragile Children's Act of 2009 will assist in its passage. We strongly believe support that this bill will help many children in need. Please continue the dialogue on understanding and helping to move this bill forward.

Update...

We have recently contacted several key stakeholders. Below is a list of who we touched base with and why...

• Rep. John Spratt of South Carolina is one of the sponsors for the Medically Fragile Children’s Act of 2009 and helped introduce it the House of Representatives on February 23, 2009. Mr. Spratt has a long history of providing healthcare to children. In 1997, he helped create SCHIP, the program that provides health care coverage for children in families that earn too little to afford health insurance for their children themselves but too much to qualify for Medicaid. In January of this year, he joined the majority of the House of Representatives in approving the Reauthorization Act of SCHIP. His statement after this success that “No child in our country should be without medical care” illustrates his commitment in this legislation. He is currently working to expand the Children’s Health Insurance Program to all eligible children.
  
• Patrick W. Finnerty is the director of Medicaid in the state of Virginia. Considering the fact that funding must come from Medicaid for this bill, getting Mr. Finnerty to support the bill is important. Individual states must agree to sign on with the Medical Fragile Children's Act in order for those children under Medicaid to be eligible for payment supplementation.
  We emailed the House Committee on Energy and Commerce because the bill is currently before the committee. We felt that it would be beneficial to contact the committee at large in hopes of providing them more information about the bill, and to show them that the bill does have the support of the public. We hope that they will visit our blog and consider what we have to say when it comes time for the bill to be discussed by the committee.
  
• Carolyn Polakowsky, Executive Director of the Fragile Kid's Foundation was considered a valuable stakeholder for her experience in providing care to medically fragile children. The foundation assists families with grants for equipment using various referrals and organizations. This bill is important for her organization as it may be able to provide a greater degree of care for these families (that qualify for Medicaid) by eliminating mulitple referrals.
  
• Laura O. Moore, the Founder and Chief Executive of Dream House for Kids , was contacted for her efforts and contribution to the medically fragile community. Her program provides educational programs for families and caregivers, in addition to creating opportunities for community and corporate partnerships focused on improving the quality of life for these families. It also assists the development specially equipped and accessible homes. The H.R. 1117 effects Dream House for Kids in a similar fashion to the Fragile Kid's Foundation.

Unfortunately there have been no recent progress for this bill. It is still in front of the House Committee on Energy and Commerce.

Political Action Plan

Political Action Plan

H.R. 1117 Medically Fragile Children’s Act of 2009

Goals & Objectives:

• To provide the public with current information regarding the Medically Fragile Children’s Act of 2009

• To gain interest and support for H.R. 1117, the establishment of an all inclusive program under Medicaid that would provide care for medically fragile children

Action Plan:

Actions and Commitments

• Form a group made up of nursing students who share a similar interest and position regarding the Medically Fragile Children’s Act of 2009, and who will meet regularly to track the bills progress and development
  
• Interact and discuss impact of bill and the need for policy change
  
• Provide up to date and accurate information and references to the public about H.R. 1117 through a professional blog
  
• Create an online forum allowing other individuals to share their own thoughts, opinions, and concerns; respond to these posted comments
  
• Initiate contact with political members who are directly involved with the bill and advocate for change and progression
  
• Invite legislators and stakeholders to become involved in the blog
  
  This may include legislators such as Rep. Tammy Baldwin (D, WI), the sponsor of the bill, along with her cosponsors: Rep. Henry Brown (D, WI), Rep. Maurice Hinchey (D, NY), Rep. Janice Schakowsky (D, IL), and Rep. John Spratt (D, SC).
  
  Stakeholders would include medically fragile and chronically ill children eligible for Medicaid along with their families , as well as, the each individual state and its Medicaid agency, and program providers and healthcare professionals
  

Response to Posted Questions

Since many people had similar questions, we will answer them here. The major question at hand is if a family is not covered by Medicaid and still under insured, will they be eligibly for assistance under this bill? Under the current terms of the bill, the answer is “No”. If a family is not covered by Medicaid then they do not qualify. While we feel that this is unfortunate we still support the bill because it is a step in the right direction. While some people who still need help will not be assisted by this bill, many people who are in desperate need of help will.

The other questions that we received have been focused on how these people will be covered. First, the money for this effort will come from title XIX of the Social Security Act(http://www.ssa.gov/OP_Home/ssact/title19/1900.htm) which says the state will cover at least 40 percent of the cost, and the rest will be covered by Federal and non-Federal funding. Second, the bill does not assign who manages the care of the patients; the bill says that the organization of care will be determined by the state. This also answers the other question of, “where does care begin?” Again this will be determined by the state and the health care organizations that the individual state works with. Finally the questions regarding how these patients will cope if the bill is not passed. There is no doubt that there will be increased problems, but these patients will be eligible for some help from Medicaid, private insurance, and several charities that provide assistance to these families.

Politics Influencing H.R. 1117

The objective of the Medically Fragile Children’s Act of 2009 can be seen in our “What is H.R. 1117” post. This is a bipartisan bill that is sponsored by two democrats and a republican. Being new to legislation, the bill currently has a small following and no major political entities or figures involved. H.R. 1117’s head sponsor is Tammy Baldwin (D) is also head sponsor of current billsH.R.307 Christopher and Dana Reeve Paralysis Act, H.R.805 Strengthening America's Public Health System Act, and H.R.389 Family Fairness Act of 2009. All of these bills involve assisting individuals with health care much like H.R.1117.

Current research shows a need for providing an inclusive program for medically fragile children under Medicaid coverage. According to the study Does Public Insurance Provide Better Financial Protection Against Rising Health Care Costs for Families of Children With Special Health Care Needs? (2008) , a multivariate analysis indicated that, given the economy-wide increase in medical costs between 2001 and 2004, a family with children with special health care needs (CSHCN) was at increased risk in 2004 for having financial burden exceeding 10% of family income. Similar findings were noted for financial burden exceeding 20% of family income. Over 15% of families with public insurance had financial burden exceeding 10% of family income compared with 20% of families with private insurance. After controlling for covariates, publicly-insured families of CSHCN had significantly lower likelihood of financial burden of >10% or 20% of family income than privately-insured families.

As of present, care for medically complicated children under Medicaid is disjointed and redundant, providing no incentive to coordinate care, education, and therapy in a way that will improve the health of the child while reducing hospitalizations and unnecessary spending. Research shows that the model currently used at MUSC , which was developed through a partnership with Palmetto Health and the state Medicaid program, has made significant strides in bringing the needs for these children under one roof.

What is the HR 1117?

HR 1117 is the Medically Fragile Children's Act of 2009 sponsored by Ms. Baldwin, Mr. Brown of South Carolina, and Mr. Spratt. This was initially referred to the committee on Energy and Commerce on February 23,2009. It is designed to amend title XIX of the Social Security Act to establish a State plan option under Medicaid to provide an all-inclusive program of care for children who are medically fragile or have one or more chronic conditions that impede their ability to function.
An eligible child is defined in this bill as the following:

• has not attained age 25
• is determined by the State to be medically fragile based on health status and related indicators (such as medical diagnoses and measures of activities of daily living, instrumental activities of daily living, and cognitive impairment)
• diagnosed as having 1 or more chronic conditions;
• requires daily monitoring of a significant medical condition necessitating overall care planning in order to achieve or maintain optimum health and developmental status, achieve community integration to the maximum extent possible, and requires both medical assistance and at least 2 additional services furnished under an all-inclusive program as a result of functional deficits;
• resides in the service area of a program provider with a program agreement under this section; and
• meets such other eligibility requirements (including eligibility standards related to family income and resources) as the State may establish pursuant to section 1902(r)(2).

This all-inclusive care program will provide items, benefits, and services to eligible children enrolled in the program through an all-inclusive and comprehensive, multidisciplinary health and social services delivery system.The medical assistance should furnish or arrange for the items and services including, but not limited to: early and periodic screening, diagnostic, and treatment services. Additional services may include: social work services, transportation services, family support services, care coordination, coordination of program services with educational, and social services for which the child is eligible, nutrition assessment and counseling, personal care services, respite care, and home and vehicle modification services.
For the most up to date information regarding this bill, please click here.