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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.
This sounds like a much needed bill. There are a lot of children who have multiple disorder and parents who just can't afford all of the supplies. For example, according to the Spina Bifida Association, the average lifetime cost for an infant born with Spina Bifida is approximately $532,000. That is a lot of money for one child. Hopefully this bill will pass and these children can get the assistance that they need, and hopefully reduce some of the stress put on the family.
ReplyDeleteFrom the supports of HB 1588: Autism Spectrum Disorder; Mandated Health Insurance Coverage
ReplyDeleteDoes this bill solely apply to those who qualify for Medicaid, or could families who do not qualify for Medicaid but still need financial help qualify for this program?
Where would the money that would go to fund this effort come from?
We agree that families who have children with chronic medical problems need financial assistance. This bill is similar to our bill in that they are both working to financially assist families with chronic medical needs, ours specifically applying to Autism.
Autism costs families 3.5 million dollars over the course of each patient's lifetime. This is a heavy financial burden which could be alleviated with the passing of this bill.
Why is only Medicaid families considered? Many private insurance families still need coordination of services, transportation, education, or therapy. All families not just Medicaid families of special needs children need Respite Care due to the stress of caring for their children.After participating in a Respite Care program I fully empathize with the added needs of families wanting their children to live and have the best life they can with their disabilities. Most private insurance families do not live in lavish homes. I would like this bill to go further to include not just families on Medicaid but all families that need help and support with the long life process of care.
ReplyDeleteDoes a case manager coordinate all the care? Where do the families begin- hospital, physician office, clinic?
If this bill isn't supported where will the funding come from for continued services for the families? This bill decreases the economical health burden by having the fragile children at home receiving services instead of in the hospital or alternate health facility.
I support this bill and would like it to go further to encompass all special needs children and families.
This bill sounds like it would be a great help to many families who have children with chronic illnesses. Chronic illnesses are a major problem and the cost of care is a major impact on many families. However, if it only covera those on Medicaid there are a lot of children who would be left without coverage. There are many people who either do not qualify for Medicaid or are under insured. What about these people? Could the bill possibly include more than just people on Medicaid? However, getting this bill passed even if it was only for children with Medicaid would be a great help to reduce costs and provide assistance to chronically ill children and their families.
ReplyDeleteThis bill sounds so important to me on a personal level. The sister of my best friend was ill with brain cancer. Her family worked tirelessly to make the money needed to support her treatment. They tried everything. The last treatment they wanted to try with her was new and experimental (therefore uncovered by insurance) as well as $10,000 per treatment. This expense out of pocket is absurd. None-the-less, her parents were willing to do anything if it would make their baby better. She died before she started the new treatment because they couldn't get the money together in time.
ReplyDeleteIf this bill were passed, then perhaps they could have afforded more of the more traditional medications and saved enough money from that to afford uninsurable, new treatments.
I personally know several children who have chronic conditions and are on Medicaid. I know that currently they recieve little to no extra benefits for having a chronic condtition that requires multiple doctors appointments a month plus special adaptive equpiment. I think that this bill is a good idea. I feel that it will greatly help reduce the cost for those lower income families that are caring for children with disabilities.
ReplyDeleteMy only question is what about those that have chronic condition who are not on Medicaid?
There are a lot of families with children with disabilities who have to use their private insurance or out of pocket for these costs.
Overall I think that this bill is a good idea. I think that those that cannot afford health care for their childrne with special needs, should have a way to allow them to recieve the care that they need.
This bill sounds like a great improvement for children with special needs that are on Medicaid. After working with children with special needs, it became very apparrent that their equipment alone can rack up a financial debt. The only question that I have is similar to the one stated earlier about the children not on Medicaid. I know there are some resources available to them, but these are usually limited.
ReplyDeleteThe contents of this bill sound good. The one thing that I have a question on is what will happen to the children that are covered under this plan after they are 25? I think the criteria for eligibility seem reasonable. In particular the one on the individual not being able to function on their own.
ReplyDelete