Video & Transcript Research : 'bone fragility'

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MA

Massachusetts 2025-2026 Regular Session

Joint Committee on Children, Families and Persons with Disabilities Jul 1st, 2026

Joint Committee on Children, Families and Persons with Disabilities

Bills: H5085, H5286
Summary: The Joint Committee on Children, Families, and Persons with Disabilities held a hybrid hearing on miscellaneous bills, including H. 5286, which would require DCF to consult a medical professional when a parent presents evidence of a pre-existing diagnosis that could explain symptoms mistaken for abuse or neglect. Representative Brian Mario said the bill would give DCF another tool in difficult cases. Jennifer Fernandes testified about her family’s experience with her grandson being removed after doctors initially suspected a skull fracture that later proved unfounded, saying the bill could help prevent similar outcomes. Committee members expressed sympathy and indicated interest in further discussion. The committee then heard extensive testimony on H. 5085/S. 3095, the omnibus “An Act Significantly Alleviating Poverty.” Supporters described the bill as a comprehensive anti-poverty package built from the Poverty Commission’s work, combining higher cash assistance grants, matched savings, baby bonds, a guaranteed stipend for youth aging out of foster care, expanded tax credits, language access, clean slate record sealing, and worker protections. Senator Eldridge, Senator Miranda, Representative Decker, and many advocates argued that poverty is tied to housing instability, child welfare involvement, health harms, and racial and gender inequities, and that the bill would help families meet basic needs, build wealth, and reduce the benefits cliff. Witnesses from social service, legal aid, labor, immigrant advocacy, and public health groups strongly supported the bill’s provisions. Several focused on specific sections: child support pass-through and a broader good-cause exception for TAFDC recipients; extending the state EITC to ITIN filers; creating baby bonds and matched savings programs; automating criminal record sealing; improving language access at state agencies; and ending the subminimum wage for farm workers. Former foster youth and service providers said the guaranteed stipend would help young adults avoid homelessness and transition more safely into adulthood. No votes were taken during the hearing, and the chairs repeatedly noted the limited time and encouraged written testimony and follow-up conversations.
AZ

Arizona 2026 Regular Session

01/22/2026 - House Health & Human Services

Health & Human Services

Transcript Highlights:
  • other medical risks that come from these cross-sex hormones, including cardiovascular disease, severe bone
  • girls, and women and men going into their teens and 20s reliant on mobility devices because their bones
  • and joints have completely degenerated, on top of having no... ...on mobility devices because their bones
FL

Florida 2025 Regular Session

March 25, 2025 - 04:00 PM

Transcript Highlights:
  • During pregnancy because of very bad morning sickness, which apparently weakens bones.
  • Causing weak bones in a case where the state sought to present the Pattersons as abusers.
  • , cartilage, blood vessels, and organs, leading to fragility.
  • vessels, and organs, leading to fragility.
  • sulfate, where there is an FDA warning for causing weakened bones in the fetus.
Summary: The Human Services Subcommittee considered three bills and reported all of them favorably. HB 1013, relating to crisis care coordination, would create a pilot program in Polk and Volusia counties to connect people who have had Baker Act-related crises with follow-up counseling, assessments, and outpatient services through partnerships between law enforcement and community providers. The sponsor said the program has reduced repeat Baker Act commitments in Polk County, and the committee adopted a strike-all amendment moving the pilot to a different statute, formalizing partnerships, and requiring an independent DCF evaluation due in January 2029. The bill drew support from mental health and justice advocates and passed unanimously. The committee then heard PCS for HB 511, which addresses child protective investigations involving specific medical diagnoses. Sponsors and several parents, attorneys, and advocates described cases in which children were removed after injuries were initially treated as abuse but later linked to conditions such as Ehlers-Danlos syndrome, metabolic bone disease, or other medical fragility. They argued the bill would require notice of the right to a second medical opinion, better consideration of preexisting conditions and medical records, and more coordination before reports are sent to law enforcement, while still preserving protections for abused children. Members expressed sympathy for the families and emphasized the need for fairness and accurate medical review; the bill passed 17-0. Finally, HB 1439, based on recommendations from the 2025 Commission on Mental Health and Substance Use Disorder, was presented as a broader mental health and substance use disorder measure focused on crisis response, access to care, and workforce development. An amendment aligned the bill more closely with commission recommendations, including assessment tools, trauma-informed practices, school-based behavioral health access, telehealth, discharge planning, and long-acting injectable treatment access. The commission chair testified that the bill reflected a vetted set of recommendations from subject matter experts and commissioners, and the committee adopted the amendment and then reported the bill favorably by unanimous vote. The meeting then adjourned.
MO

Missouri 2026 Regular Session

2026 Legislative Session - Day Sixty Two - Monday, May 4

Missouri House Floor Meeting

Transcript Highlights:
  • years old and lives with type V osteogenesis imperfecta, a genetic condition commonly known as brittle bone
  • disease, which causes bones to be fragile and more prone to...
  • Known as brittle bone disease, which causes bones to be fragile and more prone to fractures and breaking
Keywords: 959, house, all
MO

Missouri 2026 Regular Session

2026 Legislative Session - Day Sixty Two - Monday, May 4

Missouri House Floor Meeting

Transcript Highlights:
  • years old and lives with type 5 osteogenesis imperfecta, a genetic condition commonly known as brittle bone
  • disease, which causes bones to be fragile and more prone to fractures and breaking.
  • Known as brittle bone disease, which causes bones to be fragile and more prone to fractures and breaking
Summary: The House convened with prayer and the Pledge of Allegiance, then approved the House Journal for the 61st day by roll call vote, 137-1. During points of personal privilege, one member announced the death of her father, Rev. Leslie Sims, and another recognized Sherry DeVoe for becoming the first woman trainer to win the Kentucky Derby. The chamber also welcomed several special guests, including a member’s son and his fiancée after a Capitol proposal, a child with osteogenesis imperfecta and his family, the family of the Pledge leader, and a former social work practicum student from Washington University. In committee and conference-related business, the House received a report recommending passage of a deferred Senate substitute for Senate Bill 1000. Members then took up several motions to refuse to recede from House positions and request conference committees. On Senate Bill 975, members discussed ambulance district consolidation and community paramedics, and the House approved conference with Senate. On Senate Bill 973, members said the remaining issue was a drafting error involving land bank board appointments, and the House likewise approved conference. On House Bill 2818, members said the Senate substitute contained additional language affecting St. Charles County, O’Fallon, and Jefferson County, and the House voted to request the Senate recede and, failing that, go to conference. Before adjournment, members were told to be prepared to consider Senate Bill 1629, Senate Committee Substitute for Senate Bill 959, Senate Bill 1119, and Senate Substitute for Senate Bill 1421 upon return. The House then adjourned until 10:00 a.m. on Tuesday, May 5, 2026.
FL

Florida 2025 Regular Session

November 6, 2025 - 09:00 AM

Transcript Highlights:
  • PLAN OVERSEEN BY CMS HAD CUT PRIVATE NURSING  FOR OVER 100 MEDICALLY FRAGILE CHILDREN.
  • Those with autism and medically fragile children because of a quality control issue, and they will have
  • Significant steps to support families caring for medically fragile children in our state.
  • Can you define the criteria that declares a child is medically fragile? Chair: You are recognized.
  • It is in statute that defines a medically fragile child. Thank you.
Summary: The Health Facilities Subcommittee met to receive implementation updates from the Agency for Health Care Administration on three bills passed in prior sessions. First, Deputy Secretary Brian Meyer reported on the transfer of the Children’s Medical Services managed care plan from the Department of Health to AHCA under HB 1085. He said the move was administrative only, with no change to enrollment, providers, services, or clinical eligibility functions, and that it was intended to create efficiencies by aligning procurement and shifting staff resources between agencies. Members then questioned AHCA about reports of reductions in private duty nursing and therapy services for medically fragile children, including concerns about appeals, provider credentialing, and whether families were losing services or being transitioned appropriately. AHCA said it was reviewing denials, monitoring the plan, and using contractual remedies while focusing on maintaining access for members. The committee also reviewed implementation of a bill creating permanent Medicaid eligibility for individuals with permanent disabilities. AHCA staff explained that the agency had submitted a federal 1115 waiver request after public comment and stakeholder meetings, but CMS had indicated it did not anticipate approving the requested authority. Members pressed AHCA on why the waiver was submitted later than the bill’s directive date and on whether the delay was avoidable. AHCA said the waiver was complex and required review, drafting, and public input, and noted that DCF already has a specialized unit to help with redeterminations while the agencies work on operational changes. The committee discussed the practical impact on families who struggle with annual eligibility renewals and the need for clearer communication and faster follow-up from the agency. Finally, AHCA presented on the home health aide program for medically fragile children and related Medicaid eligibility changes. The agency described the 2023 law that created a family caregiver provider type and the 2025 changes that increased the hourly rate, expanded hours, reduced training requirements, and removed caregiver earnings from Medicaid eligibility calculations, subject to federal approval. AHCA said it had completed state public comment, submitted the waiver amendment to CMS, and was awaiting federal action. Members raised concerns that some families may have enrolled or begun work before the eligibility fix was in place and may have lost benefits, especially in Broward County. AHCA said it would work with affected families and plans, review outreach through DCF and the health plans, and continue rulemaking, system updates, and provider training. The meeting ended with the chair noting that the committee had received the updates and adjourned without objection.
FL

Florida 2026 5th Special Session

Judiciary Mar 25th, 2025

Transcript Highlights:
  • A connective tissue disorder can affect bones, blood vessels, organs, and cartilage, causing fragility
  • Additionally, medications I was prescribed during pregnancy further weakened their bones.
  • A connective tissue disorder can affect bones, blood vessels, organs, and cartilage causing fragility
  • Additional bones, blood vessels, organs, and cartilage causing fragility.
  • The pediatrician clinically diagnosed her with a brittle bone disease.
Summary: The committee first took up CS for Senate Bill 304, which would address child protective investigations involving children with certain genetic or medical conditions that can mimic signs of abuse. Senator Sharif and several family members and advocates described cases in which children were removed after injuries were initially misread as abuse, and argued the bill would give parents more opportunity to obtain qualified medical opinions. The committee adopted a substitute amendment that removed language imposing analysis duties on certain medical professionals, then passed the bill favorably after testimony in support from the Florida chapter of the American Academy of Pediatrics and several affected families. The committee then considered SB 1430 on post-judgment execution proceedings for terrorism victims, SB 96 on relief for Jacob Rogers, SB 382 on affordable housing rent agreements, SB 4 and SB 6 on claims bills for Patricia Armini and Jose Correa, SB 1142 on release of conservation easements, SB 658 on waiver or release of liens, SB 28 and SB 30 on claims involving South Broward Hospital District and the Broward County Sheriff’s Office, SB 24 on relief for Mandy Penny Lemon, SB 72 on campaign funds for child care expenses, and SB 1622 on recreational customary use of beaches. Most of these bills were explained by their sponsors as narrow relief or technical measures, and the committee heard a mix of support and opposition from claimants, local governments, industry groups, and advocacy organizations. Several bills drew substantive debate. On SB 382, members discussed rent stability and whether the bill should better address lease language and future rent increases; the amendment and bill were both reported favorably. On SB 1142, members raised concerns about environmental and drainage impacts and whether releases of conservation easements should be mandatory or discretionary, but the bill still passed favorably. On SB 72, members questioned the scope of allowable campaign child care expenses and the need for stronger guardrails against abuse; the bill nevertheless passed favorably. On SB 1622, testimony sharply divided between supporters of restoring public beach access and opponents defending private property rights; debate continued when the transcript ended, so no final vote on that bill is reflected here.
FL

Florida 2026 Regular Session

Judiciary Mar 25th, 2025

Judiciary

Transcript Highlights:
  • A connective tissue disorder can affect bones, blood vessels, organs, and cartilage, causing fragility
  • Additionally, medications I was prescribed during pregnancy further weakened their bones.
  • A connective tissue disorder can affect bones, blood vessels, organs, and cartilage causing fragility
  • Additional bones, blood vessels, organs, and cartilage causing fragility.
  • Raniya's pediatrician clinically diagnosed her with a brittle bone disease.
Summary: The committee first took up CS for Senate Bill 304, which would address child protective investigations involving children with certain pre-existing genetic or medical conditions. Senator Sharif said the bill is intended to prevent children from being wrongly removed from their families when symptoms of conditions such as Ehlers-Danlos syndrome, osteogenesis imperfecta, rickets, or vitamin deficiencies are mistaken for abuse. Several parents and advocates testified in support, describing long dependency cases and removals they said were caused by misdiagnosis. The committee adopted a substitute amendment that removed language requiring certain medical personnel to provide differential-diagnosis analysis, and the bill then passed favorably with unanimous support. The committee then heard SB 1430 on post-judgment execution proceedings relating to terrorism, sponsored by Senator Collins, who described the long effort by U.S. victims of the FARC to enforce a federal judgment and recover assets. The bill would clarify procedures for terrorism-related judgments, modernize intangible asset law, and help prevent terrorists from hiding assets or blocking wire transfers. After one supportive appearance form and no debate, the bill passed favorably. The committee also approved SB 96, a local claims bill for Jacob Rogers, and SB 382, an affordable housing rent bill that was amended to define base rent and apply to certain shorter-term rental agreements entered after July 1, 2026; SB 382 drew support from housing advocates and some opposition, but passed unanimously. Several claims bills were also approved: SB 4 for Patricia Armini, SB 6 for Jose Correa, SB 28 for Darlene Engerville and J.R., SB 30 for the estate of M.N., and SB 24 for Mandy Penny Lemon, each involving injuries or damages caused by local government or hospital district negligence and each reported favorably after brief testimony and roll calls. The committee also passed SB 658 on waiver or release of liens after discussion about form language and enforceability. SB 72, which would allow campaign funds to pay certain child care expenses incurred while a candidate is actively campaigning, prompted questions about definitions and safeguards; the sponsor said the bill would require the expense to exist only because of campaign activity, and the bill was reported favorably. Finally, the committee approved SB 1142 on release of conservation easements, which would create a statewide process for releasing certain small, low-value parcels from conservation easements if mitigation credits are secured elsewhere. The bill drew support from the sponsor and a property representative, but environmental advocates and President Passidomo raised concerns about flood control, wildlife corridors, and whether the bill was too property-specific; the sponsor said he would continue working on the language. The committee also heard extensive testimony on SB 1622, which would repeal the 2018 customary use law and restore local authority over public beach access. Supporters argued the current law has privatized beaches, hurt tourism, and led to harassment and conflict, while opponents defended private property rights and warned against taking away owners’ ability to exclude others. The transcript ends during testimony on SB 1622, before a final vote is shown.
FL

Florida 2025 Regular Session

March 19, 2025 - 10:30 AM

Transcript Highlights:
  • We were in a T-bone accident, and he was transported to the hospital via ambulance.
  • House Bill 1085 focuses on improving care for medically fragile children enrolled in Florida's Medicaid
  • And third, it would ensure all services for medically fragile children, including the PPEC, which is
  • being said, I completely understand the concern of the parents for this really specific, medically fragile
  • You know, I do have a little bit of reservation putting fragile kids that are in a special subset back
Summary: The Health Care Facilities and System Subcommittee met with a quorum and considered five bills. HB 1101 on out-of-network providers drew the most discussion; Rep. Albert said it would require written notice when a patient is referred to an out-of-network provider and would count certain insurer payments toward deductibles. Several members and the Florida College of Emergency Physicians raised concerns about placing the burden on doctors’ offices, possible delays in referrals, and unclear enforcement, but the bill was reported favorably 16-2. Public testimony included support from AARP and concerns from emergency physicians about ER workflow and insurance-network transparency. The committee then unanimously approved PCS for HB 475, reducing fines for ambulatory surgery centers that violate good-faith estimate requirements from $1,000 to $250 per day, with a lower maximum penalty. The bill sponsor said the change was intended to right-size penalties for smaller facilities; witnesses from surgery centers and HCA supported it. HB 797, which would allow a nonprofit retirement community serving veterans and spouses to create veteran-and-spouse nursing home beds and transfer a certificate of need within 100 miles, also passed unanimously after members discussed whether it could affect access for veterans; the sponsor said it would create additional private beds rather than displace existing ones. HB 1085 on the Children’s Medical Services Program was amended and reported favorably 14-3. The bill would move managed care plan operations for medically fragile children from the Department of Health to AHCA, keep clinical eligibility at DOH, and shift PPEC services fully into managed care. The adopted amendment changed the waiver provision to require AHCA to develop and present a comprehensive redesign plan for the Medicaid model waiver for children receiving private duty nursing. Several members supported the goal but raised concerns about eliminating family choice and the impact on medically fragile children. Finally, HB 1353 on home health care services passed unanimously. The bill would remove geographic limits on home health administrators, allow more licensed RNs including contract RNs to perform visits, and revise the home health excellence award program. Supporters said it would address workforce shortages and improve access, while one member warned it could increase costs and competition for nurses. The committee adjourned after reporting all five bills favorably.
FL

Florida 2026 4th Special Session

February 3, 2026 - 08:00 AM

Transcript Highlights:
  • Representative Bartleman: Medical conditions such as Ehlers-Danlos syndrome, brittle bone disease, and
  • Sure enough, the mom has all the signs of metabolic bone disease.
  • All the child's blood work lines up with bone brittleness, and she was referred for genetic testing for
  • genetics for metabolic bone disease at her first pediatric visit long before DCF got involved.
  • The Child Protection Team will do a basic bone fragility genetic test that does not come anywhere close
ND

North Dakota 2025-2026 Regular Session

Senate Appropriations - Human Resources Division Apr 7th, 2025 at 09:30 am

Appropriations - Human Resources Division

Transcript Highlights:
  • We'll have to put some flesh on these bones and some... ...on these bones, and somebody needs to work
  • It needs to be appropriate for people who are medically fragile, allows them to be in the least restrictive
  • For people who are medically fragile, allows them to be in the least restrictive environment and person-centered
Bills: SB2015
Summary: The Senate Appropriations Human Resources division met with a quorum and spent much of the meeting on a proposed “medical home” concept for people with significant disabilities and medical needs. Matt Schwartz described the need for small, community-based homes so adults like his daughter could live in a least-restrictive setting without losing housing if service providers change. Architect Jeff Eubel presented a conceptual budget for one roughly 5,000-square-foot facility for four residents, explaining that the design would likely include four large sleeping units, common space, support areas, and medical infrastructure such as emergency power, oxygen, sprinklers, and accessibility features. Committee members and George Sink, joining by phone, raised questions about layout, zoning, ownership, staffing, and whether families would actually move loved ones into such facilities if they were far from home. The department said the concept was not in the governor’s budget and identified staff who could continue discussions; the committee did not take final action and instead discussed refining the language with interested members. The committee then turned to amendments related to long-term care and behavioral health funding. One amendment would reduce a planned $4 million general fund incentive payment and instead create a withhold-based quality program for nursing facilities, to be developed collaboratively by the department and providers and reported to Legislative Management by September 2026. The department said it could live with the language but preferred the governor’s timing; several senators questioned whether the committee should be directing an operational policy change and whether the study would simply delay implementation. No vote was taken, and the amendment was set aside for later consideration. A second amendment would clarify use of an existing $2 million general fund item for behavioral health services in nursing homes and basic care facilities, directing it toward training, technical assistance, consultation, and direct patient care for residents with medically based behavioral health disorders. Members noted the funding was already in the bill and discussed it in the context of other budget items, but again deferred action. The committee also clarified that a separate $750,000 juvenile justice diversion appropriation in House Bill 1425 was distinct from a similar amount in the budget and should likely remain in that separate bill. The chair indicated a goal of having amendments ready by the end of the week, and the committee recessed without final votes on the discussed items.
FL

Florida 2026 Regular Session

Children, Families, and Elder Affairs Jan 12th, 2026

Children, Families, and Elder Affairs

Transcript Highlights:
  • I have personally worked on a case where a medically fragile child was removed after a non-specialist
  • This is directly related to bone fragility as well. This is why Senate Bill 42 matters so deeply.
  • her treating pediatrician, as the young lady shared before, clinically diagnosed her with a brittle bone
  • However, it confirmed that she did have a metabolic bone disease.
Bills: S0042, S0578, S0624, S7018
Summary: The committee met with a quorum and first heard SB 624, which would codify DCF’s current practice of allowing batterers intervention programs to offer supplemental faith-based activities so long as participation is voluntary. The bill drew support from faith-based and family organizations, which argued it would restore access to effective rehabilitation options and remove discriminatory barriers. SB 624 was reported favorably after a roll call vote. The committee then heard SB 42, which would require child protective investigators and child protection teams to rely on qualified medical professionals when a child has a documented pre-existing diagnosis or when a parent requests an exam, and would require clearer notice to parents and custodians at the start of an investigation. Testimony overwhelmingly came from parents, advocates, and disability rights representatives describing cases in which medically complex children were allegedly misdiagnosed as abuse victims and families were separated unnecessarily. Members expressed sympathy and support, and SB 42 was reported favorably. Next, the committee considered CS/SB 578, creating an Alzheimer’s disease awareness initiative within the Department of Elder Affairs to promote early detection, brain health education, research updates, and clinical trial awareness, with outreach focused on older adults and at-risk populations. An amendment was adopted to place the campaign within the Alzheimer’s Disease Initiative. A caregiver testified about the need for public education and early diagnosis, and the bill was reported favorably. The committee also took up SPB 7018, a committee bill on child welfare that would extend the definition of “visitor” for foster homes to reduce repeated background checks, make the Step Into Success foster youth workforce pilot permanent and statewide, and create a program through the Florida Institute for Child Welfare to catalog best practices among community-based care lead agencies. The bill was approved as a committee bill and reported favorably. Finally, the Department of Children and Families presented its 2025-26 final funding methodology and rates report for community-based care. Members questioned the proposed tiered model, including insurance costs, risk corridors, prevention funding, performance measures, and regional funding disparities. No vote was taken on the presentation, but members discussed the possible need for follow-up legislation and additional stakeholder input.
MN

Minnesota 2025-2026 Regular Session

Committee on Human Services - 04/13/26

Human Services

Transcript Highlights:
  • CAC recipients are the most fragile medically fragile Minnesota citizens.
  • people in this state using a fragile people in this state using a tool<01:21:50.640> that<01:
  • Families like mine, the outliers, are already cutting every corner, and this cuts to the bone.”
  • cuts to the bone. cuts to the bone.
  • already fragile before you redesign it. already fragile before you redesign it.
Keywords: 1187, senate, all
CA

California 2025-2026 Regular Session

Assembly Floor Session Feb 9th, 2026

California House Floor Meeting

Transcript Highlights:
  • My mother always said to us, or to my sisters and I, sticks and stones may break your bones, but words
  • There's a saying, and my colleague noted it before: 'Sticks and stones may break my bones, but words
  • We said that, ...stones may break my bones, but words will never hurt me.
  • I submit to you today that our unity is equally fragile. Racism... ...unity is equally fragile.
Summary: The Assembly convened after a quorum call, completed the roll, and opened with prayer, the Pledge of Allegiance, and several guest introductions recognizing visitors, students, and a long-serving committee secretary, Tabitha Volga-Sang, who was honored for 32 years of service. Members also took up a procedural motion by Assembly Member DeMaio to immediately consider ACA 14, the Taxpayer Protection Act, without reference to file; that motion failed on a 14-44 vote. The main policy debate centered on SB 106 by Senator Laird, a budget appropriation to provide $90 million in one-time funding for Planned Parenthood and related women’s health and family planning services after federal cuts. Assembly Member Tangipa offered amendments arguing the money should be directed more broadly to women’s health and hospitals, but the Assembly voted 41-13 to lay the amendments on the table. Supporters, including Gabriel, Sharp-Collins, Gibson, Krell, Bonta, and others, said the bill was needed to preserve access to cancer screenings, contraception, STI testing, and reproductive care, especially in rural and underserved communities, and to offset the effects of federal defunding. Opponents, including Johnson, DeMaio, Patterson, and Tangipa, criticized the bill as lacking transparency, favoring a politically connected organization, and diverting attention from hospital funding and other health needs. After extended floor debate, SB 106 passed the Assembly 55-10 and was transmitted immediately to the Senate. The chamber then took up H.R. 84, a resolution condemning racism after President Trump circulated racist imagery depicting former President Obama and Michelle Obama. Members from the Black, LGBTQ, Latino, AAPI, Jewish, Native American, and other caucuses spoke in support, saying the post normalized dehumanization and had real-world consequences; Assembly Member Tangipa also stated the post was wrong and apologized on the record. The transcript ends during continued debate on H.R. 84, before a final vote is shown.