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Bipartisan Senate Farm Bill Rejects the Harm of the House Version

| June 21, 2018 |

Last week, the Senate Agriculture Committee advanced the Agriculture Improvement Act of 2018, also known as the Farm Bill. Unlike their counterparts in the House, the senators who crafted this bill did so in a bipartisan fashion. As a result, the draft legislation rejects the House’s harmful changes to the Supplemental Nutrition Assistance Program (SNAP)—which is good news for low-income children.

SNAP is the first line of defense against hunger and food insecurity for low-income individuals, especially the 19.2 million children who represent nearly half of all SNAP participants. This Farm Bill acknowledges the critical role that SNAP plays in lifting children out of poverty and keeping food on the table. Specifically, it avoids the House Bill’s many harmful changes that would have resulted in households with children receiving reduced SNAP benefits—if not losing them entirely. It also fully rejects the Administration’s harmful and expensive proposal to fundamentally change the nature of the program by shifting a portion of a family’s benefits to a system of “Harvest Boxes.”

The Senate Farm Bill also invests in the SNAP’s effectiveness by making it easier for seniors—including those who are acting as legal guardians for their grandchildren—to stay on SNAP, and adds additional resources to programs that incentivize SNAP participants to use their benefits to purchase healthy food options such as fresh fruits and vegetables. With this bill, the Senate Agriculture Committee has recognized the fundamental role that food assistance plays in helping struggling families get back on their feet. Preserving the existing structure and scope of SNAP is an investment in the health, education, and future economic success of our nation’s low-income children.

Of course, the Senate Farm Bill does not pursue the types of policy changes that would make SNAP even more effective for children. While SNAP is an incredibly effective program, monthly benefits are often inadequate for families with children, who report exhausting their allotment by the end of the month. Similarly, existing rules that take SNAP benefits away from so-called Able-Bodied Adults Without Dependents (ABAWDs) if they don’t meet work requirements after 3 months can, and do, have spillover effects on children and youth. For instance, youth aging out of foster care experience high rates of unemployment and poverty. Yet this population, as well as unaccompanied homeless youth, faces barriers to accessing SNAP due to existing ABAWD time limits.

These problems have solutions: for instance, Senator Gillibrand has offered legislation—the SNAP for Kids Act (S. 2723)—to increase monthly benefit sizes for families with school-aged children. Representative Lawson last year introduced the College Student Hunger Act (H.R. 3875), which would allow college students to be eligible SNAP if they are in foster care or are classified as an unaccompanied youth who is homeless.

Still, in this polarized political climate, the mere production of a bipartisan bill—even if it does not contain the aspirational policy provisions mentioned above—is a victory, especially when it means families with children won’t have to worry about losing their ability to put food on the table.


The Trump Administration Abdicates Support for Children with Pre-Existing Conditions

| June 12, 2018 |

My last couple years as a child health advocate in Iowa were before, during, and right after the passage of the Affordable Care Act (ACA). Though I worked on kids’ health issues, specifically Medicaid and the Children’s Health Insurance Program (CHIP), I had of course heard many, many stories insurance companies denying private coverage to people, adults and kids, denying coverage to people for the very things for which they needed coverage — their pre-existing conditions.

Sure, they weren’t always denied coverage flat out, sometimes they were priced out of it. One dad, a farmer, told me that even though his child was eligible for affordable and good coverage through hawk-i (CHIP in Iowa), he wouldn’t put his daughter on it because if they weren’t financially eligible in a year or two, due to a good farming season, he knew her asthma, a pre-existing condition, wouldn’t be covered on the individual market. It was a risk the dad, who couldn’t easily afford the private coverage for her even then, wasn’t willing to take. She wasn’t enrolled in CHIP even though it would have saved the family hundreds of dollars a month, because back then, denying someone, even a child, coverage for their “pre-existing condition” was allowable and commonly practiced. If she needed private coverage again, her asthma wouldn’t be covered. One uninsured trip to an emergency room for an asthma attack, could have put the family in real financial danger.

Another story I remember well is the woman who came to the state capitol to advocate for better health care policies. She had had recurring breast cancer and then lost her job. The only plan she was offered on the private market would insure her from the neck up and from her thighs down. None of her major organs were covered. Only her arms, legs, and her head were insured. She was completely terrified. She told me she would was afraid to be without coverage for the cancer especially since she was a mother of two young children. She didn’t want to die and leave them motherless.

Those are just two of the stories, among some from my own family, that I thought about when the ACA passed and excluding people on the basis of having pre-existing conditions became disallowed. It was a joyous, hopeful time. People were excited to finally gain access to health coverage, to start businesses, to change jobs, to go back to school, to save money. Under the ACA, children under age 19 were some of the very first to benefit from the prohibition of the pre-existing condition exclusions. That policy went into effect September 23rd, 2010, six months after the law was signed. Though it benefitted many children, there were insurance companies who immediately stopped selling single plans to children in order to avoid covering kids with what insurers saw as pre-existing conditions. This was infuriating and seemed to be in defiance of the law. It was a precursor of the battles to come.

The ACA has withstood many challenges at the state, local, and federal levels in court, and from within Congress. While preserving the bulk of the ACA, the Supreme Court decided the mandated Medicaid expansion of coverage was “coercive” and gave states the option to do it, leaving millions and millions of people without that benefit in states that haven’t yet expanded. The Obama administration defended the law time and again, and it held as the law of the land in courts of law. Last summer Republican members in Congress tried numerous times to repeal and replace the law, but were unsuccessful when people around the country fought back. Then came the tax bill in late 2017. In that bill, the financial penalty within the ACA’s mandate to have insurance was removed starting in 2019. Following that, a lawsuit was filed in Texas in early 2018 declaring the whole ACA unconstitutional, based on the repeal of that monetary penalty.

Now comes the letter from Attorney General Sessions to Speaker Ryan saying the Department of Justice (DOJ) will not defend the individual mandate in court and will also argue that without the individual mandate, the pre-existing protections within the ACA are also unconstitutional.

Pre-existing conditions, those health issues that start before one’s health insurance benefits are in effect, some of us know so very well, include an expansive list. In terms of children, think of every child you know who was in the NICU at birth, who has asthma, maybe takes ADHD medication, has juvenile diabetes, childhood cancer, developmental disabilities, or cystic fibrosis. Those are the kids who could lose coverage for those specific illnesses, or total coverage, once again. They could lose their medications, therapies, treatments, and hospital care. Those are the kids whose parents are terrified right now, even though this case could take a long time to be resolved in the courts. These are the kids, millions of them, this administration will not defend.

No family should have to go through this fear again. After all they went through to eliminate the pre-ex barriers, and after all families did to protect themselves last summer and fall against the attacks on the ACA, no one should have to worry about this again.

And yet, here we are.


House TANF Bill Does Not Go Far Enough in Reducing Child Poverty

| June 1, 2018 |

Last week, the House Ways & Means Committee passed the Joining Opportunity with Benefits and Services (JOBS) for Success Act (H.R. 5861), which reauthorizes the Temporary Assistance for Needy Families (TANF) program for five years and makes some fairly significant changes to the program.

While we were pleased with some of the changes included in the (JOBS) for Success Act, including the addition of child poverty reduction as an explicit goal of TANF, we remain very concerned that the changes to TANF proposed in the bill will not significantly strengthen TANF’s ability to reduce child poverty.

Research makes clear that money matters to child well-being. Numerous studies show that when family income rises, it has positive effects for healthy child development, including academic achievement and educational attainment. TANF is the only federal program that provides cash assistance for families, which is critical to help with the cost of resources not covered by other programs, such as diapers, clothing, transportation, utilities, and more.

The overwhelming majority of TANF recipients are children, yet fewer and fewer children are receiving cash assistance, with just under 25 percent of all poor families with children receiving cash assistance today. As a result, the effectiveness of TANF in reducing child poverty continues to diminish. Due to its nature as a fixed block grant, TANF is not able to be effective in responding during times of increased need and the block grant has fallen in value by over 30 percent due to inflation since 1996.

The JOBS for Success Act does not propose to increase funding for the block grant or improve upon the ability of TANF to respond during times of increased need. Without improvements to these aspects of the program, TANF’s potential to reduce child poverty in the U.S. remains limited.

The shift to evaluating state performance based on parental employment outcome measures is positive, however, states must be held accountable to helping people exit TANF with quality employment that provides their family with a wage sufficient for long-term household economic security. States must also allow parents to meet work requirements through pursuing higher education, skills training or vocational education, and guarantee child care assistance, transportation assistance, and other supports.

Yet the overwhelming majority of TANF funds go to children, and nearly 40 percent of TANF cases are “child-only,” meaning that only the child in the household is receiving assistance. Therefore, in order for states to meet this added goal of reducing child poverty, it is critical that state performance is not only measured on parental employment upon leaving TANF, but also on how many children are lifted out of poverty in all TANF caseloads.

During the mark-up, Congressman Danny Davis offered an amendment to create a national child poverty target in the U.S., which would set the goal of cutting child poverty in half within a decade and eliminating it within 20 years. As members of the U.S. Child Poverty Action Group discussed in a letter sent to the Ways & Means Committee, this would be a significant step in holding federal, state and local governments accountable to reducing child poverty through TANF and other programs. While this amendment failed, we were encouraged that Chairman Brady and Congresswoman Jenkins’s expressed a commitment to working with Congressman Davis’s office on this effort.

Reaching economic security is a long road for many families. While parents and caregivers are working towards upward mobility, we need to ensure that every family is provided with enough cash assistance to provide sufficient resources for children while their brains are undergoing critical stages of development.

For additional details on the JOBS for Success Act:

House Ways & Means Committee Section by Section Summary

Mark-Up Video and List of Amendments

For recommendations on TANF reform from the U.S. Child Poverty Action Group:

Children Living in Poverty Need TANF Reform

A Child-Focused Approach to TANF Reform


The Greatest Investment in Our Pediatric Workforce Needs Support

| May 25, 2018 |

The House Energy and Commerce Committee held a hearing on the Children’s Hospital Graduate Education Program (CHGME) this week. This vital program trains physicians who are on the front lines of treating our nation’s children.

Funded last year at $300 million, the program is the nation’s greatest single investment in our pediatric workforce. CHGME was created in 1999 as Congress recognized that a dedicated source of support for training in children’s hospitals was necessary to strengthen the pediatric workforce. Since then, CHGME funding has enabled children’s hospitals to dramatically increase training overall, and, in particular, grow the supply of pediatric specialists.

According to testimony provided to the House Energy and Commerce Committee, between 2000 and 2015, hospitals supported by CHGME increased the number of residents trained by 113 percent.1

Unfortunately, even with this investment, the program has only funded the residency of only 40 percent of the general pediatric residencies across the nation. It also only funds approximately 50 percent of the of all pediatric specialists, approximately 7,000 annually.

First Focus is thankful for this vitally important hearing, especially for shining a light on the need to train more sub-specialists, where there is a greater need.2

Based on data by the American Medical Association, the number of programs around the country fall short of meeting the nation’s need. For instance, there are only 73 pediatric emergency medicine programs around the country that trained 463 residents in 2015. During that same year, there were only 125 child and adolescent psychiatry programs training 787 residents.3

This has also caused children to spend a significant amount of time before meeting with a specialist. For instance, children with developmental disabilities wait, on average over 18 weeks for an appointment. 4 Children requiring psychiatric services are waiting close to 10 weeks. 5

CHGME is a discretionary program that has to date received bi-partisan support. It has also provided considerably less than what the nation requires. This country can do more for our children. While we invest in the other systems of development for our children, let’s make sure kids with the most need can see a doctor best suited for them.


1 Testimony by Gordon E. Schutze M.D. F.A.A.P., Baylor College of Medicine to the House of Representatives, Committee on Energy and Commerce.

2 Children’s Hospital Association

3 American Medical Association 2015 Data

4 Children’s Hospital Association

5 Children’s Hospital Association


This Foster Care Month, Pass Laws to Improve the Lives of Foster Children

| May 7, 2018 |

May is National Foster Care Month. Last week President Trump issued a statement in support of this recognition and expressed gratitude for the thousands of families who generously open their homes to children and youth who have experienced abuse and neglect. National Foster Care Month brings attention to needs and resilience of children and youth currently in foster care and those who have aged out of foster care, the selfless work of child welfare advocates and providers, and the compassion of kinship caregivers and foster families.

In 2017, national headlines uncovered the uptick in numbers of kids entering foster care due to the national opioid crisis and highlighted a need for reform in our nation’s approach to child abuse and neglect and treatment for parents in need of substance use treatment. The recent passage of the Family First Prevention Services Act (FFPSA) was a major victory for many child welfare advocates on both the state and federal levels. FFPSA is bipartisan legislation that allows states and tribes to devote Title IV-E funding to mental health and substance use treatment, and parenting education and skills programs that help keep families intact and out of the child welfare system. The First Focus is supportive of this legislation and stands ready to assist state partners with technical assistance and advocacy efforts for effective implementation of the law.

The enactment of the Family First Prevention Services Act is just the beginning. More can and should be done for youth in foster care, youth aging out of foster care and the families affected by a child’s entry into the child welfare system. Several bills aimed at addressing the concerns of children in foster care have been introduced in the 115th Congress. While we applaud the introduction of such effective legislation, more action is needed to ensure these policies are enacted and put to work for our most vulnerable young people.

Among the bills yet to be enacted is a bipartisan bill introduced by Chairman Hatch (R-UT) and Ranking Member Wyden (D-OR), the Child Welfare Oversight and Accountability Act of 2017 (S.1964). This bill would follow the recommendations of a two- year investigation to strengthen accountability of child welfare systems and individual providers throughout the nation. The Health Insurance for Former Foster Youth Act (S.1797/H.R.4998), introduced by Sen. Bob Casey (D-PA) would correct an unintended loophole to ensure that Former Foster Youth have continuous coverage as they transition to adulthood. Other important bills include the Fostering Stable Housing Opportunities Act of 2017 (S.1638 / H.R. 2069), Higher Education Access and Success for Homeless and Foster Youth Act (S.1795), Timely Mental Health for Foster Youth Act (S.439/H.R. 1069) and the Foster Youth and Driving Act (H.R. 2512). You can see the complete list of bills here.

In honor of National Foster Care Month, we urge congressional leaders to come together in a bipartisan manner to these legislative proposals that will enhance the quality of life for current and former foster youth. Over the course of the month First Focus Campaign for Children will be highlighting child welfare bills that have been introduced in the 115th Congress that need action. We urge you to join us in making children the priority in Congress.

Follow us on Twitter @Campaign4Kids to help promote the movement of these policies.

For the latest on these policies and others affecting children, check out the First Focus Campaign for Children Bill Tracker.


A New Effort to Boost Children’s Oral Health and Family Success

| April 30, 2018 |

While you might not think about your oral health until you suffer from dental pain, tooth decay remains the most chronic condition among children nationwide. It can hurt a child’s ability to eat, sleep, and learn. In fact, children with poor oral health are four times more likely to earn lower grades than their healthier peers. As kids grow up, poor oral health can lead to lower wages or limited job prospects. Those are some pretty hefty consequences for a disease that can be prevented if children and families get the right support.

How can we improve children’s oral health so they can reach their full potential?

Having dental coverage is a piece of this puzzle. We are proud to have collaborated with First Focus in the hard-won fight to protect a key source of dental coverage for kids – the Children’s Health Insurance Program. It was thankfully renewed for a decade earlier this year. And, we continue to work together to safeguard Medicaid against threats that could jeopardize oral health access for children in struggling families. Due, in part, to the guaranteed pediatric dental benefits in CHIP and Medicaid, nearly 9 in 10 children have dental insurance today. Gains made by the Affordable Care Act have also made a difference. Coverage can open the door to children getting needed dental care, whether to prevent or treat harmful decay.

But having coverage alone isn’t enough to keep our kids healthy. As First Focus knows, a child’s health and well-being are affected by the opportunities and challenges their parents or caregivers face, from their access to jobs with a living wage to their own access to health coverage. Even without current threats to Medicaid coming to fruition, parents and caregivers in most states have greater barriers to dental coverage and care than their children do. These are among the circumstances that keep many families from being able to place their children on a path of good oral health, and have broader implications for family success.

The Children’s Dental Health Project (CDHP) wants to know more about how these crucial links can inform policies to help more kids stay healthy. As our new video highlights, CDHP has launched a new initiative addressing oral health within the context of families and the many barriers to family well-being.

 

 

In particular, we want to take a closer look at what opportunities we create (or miss) when we address the oral health of the entire family. Taking a more holistic and multi-generational approach could improve children’s and families’ oral health, improving their overall health and success. At this stage, CDHP is focused on the intersection of oral health and:

  • the economic stability of families
  • family stressors and/or mental health
  • adverse childhood experiences
  • children’s educational outcomes
  • more that we have yet to discover

We hope this investigation leads to new policies that integrate oral health into where we live, work, and play, and how we use and pay for health coverage and care. Solutions that recognize the relationship between these factors and the oral health of the whole family could help more children and families get the support they need.

Embarking on this project, we invite First Focus and its partners to join us. CDHP is new to the bigger frame of family success, “2Gen” approaches, and whole family interventions. In fact, we aren’t even sure what to call it, and we know we need to learn more about the role of oral health in these models. We don’t claim to have all the answers. However, we are opening our doors to new and exciting collaborations to offer our knowledge and experience on oral health — and to learn from experts who have been working on these broader issues for decades. We want to challenge you to think about the role of oral health in your current work, and together strengthen systems that can help kids and families nationwide reach their full potential.


Meg Booth is executive director of the Children’s Dental Health Project, a policy institute in Washington, DC advancing solutions so all children achieve oral health. Learn more at www.cdhp.org.


New HUD Proposals Are the Wrong Direction for Children

| April 27, 2018 |

Affordable housing remains one of the main barriers to economic stability for many families. Housing costs continue to increase in the United States, yet family income has not kept pace. One-third of U.S. children live in households with a high housing cost burden, defined as spending more than 30 percent of the household’s monthly income on housing.

Housing instability, which includes situations such as being behind on rent and making multiple moves, is associated with an increased risk of poor child health, including hospitalizations and of maternal depression.

Sustained housing instability can lead to homelessness, which can further destabilize families, causing trauma with severe negative implications for children’s healthy development and hurt their opportunities for educational achievement and attainment.

Access to housing assistance remains extremely limited—only one in four families who are eligible for rent assistance in the United States receive it. Yet earlier this week, U.S. Department of Housing and Urban Development (HUD) Secretary Ben Carson announced a proposal that would further limit access to housing assistance for families.

Secretary Carson proposed to:

  • Increase rent for tenants in subsidized housing from paying 30% of their gross income to 35% of income, affecting 4.7 million families
  • Triple minimum rent for households to $152, which raise rents for about 1.7 million people
  • Give HUD unlimited, unilateral authority to impose additional rent increases
  • Allow public housing agencies to impose work requirements
  • Remove deductions from income calculations for medical expenses and child care costs

While elderly and individuals with disabilities are exempted from the work requirements and rent increases (for a six-year period), there is no similar exemption for families with children.

In most low-income households with children, there is at least one family member who is working. Yet due to low wages and skyrocketing rents, parents still struggle to make ends meet.

Imposing work requirements would only create bureaucratic documentation barriers that would result in families with children losing this important assistance. Combined with the increases in rent and elimination of a deduction for child care costs, these changes would have a devastating impact for low-income families with children.

The Center on Budget and Policy Priorities estimates that increasing the minimum rent for households would put a million children at risk of homelessness. Child and youth homelessness is already skyrocketing, with 1.3 million students identified as homeless by the U.S. Department of Education.

In addition, HUD officials have claimed that due to budgetary constraints, they will be prioritizing housing for seniors and people with disabilities, as well as removing lead-based paint from housing.

First Focus urges that, along with seniors and people with disabilities, we must prioritize families with children. The U.S. has the ability to assist all of these populations simultaneously, and it is crucial that children have stable housing while undergoing critical stages of development.

In order to actually help families achieve economic security, we should make investments in affordable housing, childcare, transportation, higher education, and job training.

When it comes to increasing access to stable housing, we need to increase rental assistance, expand access to civil legal services for families facing evictions and other housing disputes, and build upon programs that pair housing with wraparound services. This includes increasing and building upon partnerships between public housing authorities and public school systems designed to improve the educational outcomes of children living in subsidized housing.

To learn more:

Housing Instability in the U.S.: Not Just a Problem of Housing Affordability


Separating Children From Their Families Is Cruel and Un-American

| April 26, 2018 |

An 18-month-old toddler is currently being held in San Antonio while the mother is 120 miles away in an immigration detention center. A mother seeking asylum from the Republic of Congo was sent to detention center in San Diego while her daughter was taken to a facility in Chicago. Last month three siblings fleeing gang violence in El Salvador were taken to a shelter in Arizona while their mother was taken to a detention center in Buffalo.

This week, the New York Times confirmed that more than 700 children have been separated from their families by ICE at the Southern border since October. While these stories have invoked national headlines, the widespread occurrence has been hidden until now.

The policy of separating families at the border was publicly discussed in 2017 by the Trump administration as a deterrence tactic to discourage families from seeking refuge in the United States. Officials from the Department of Homeland Security (DHS) now say they are not splitting families as a deterrence tactic, but rather to protect the best interests of minor children crossing the border.

These children and families have faced inconceivable hardships and escaped a life of violence, war, and poverty in their home countries. Alienating them from the only support that they have in the country will only add to the trauma they have experienced.

“The idea of punishing parents who are trying to save their children’s lives and punishing children for being brought to safety by their parents by separating them, is fundamentally cruel and un-American.”

– Michele Brane, Director of Migrant Rights and Justice program at the Women’s Refugee Commission

In addition to separating families at the border, the Trump administration is increasing interior enforcement efforts including workplace raids which often result in the loss of a primary caregiver. Earlier this month in Tennessee, a devastating raid took place resulting in 97 arrests. In rural Tennessee this massive raid was a nightmare for families as their mothers, fathers, husbands, and wives were suddenly swept away. Consequently, more than 500 students did not show up to school the next day causing the community to come together to support the families who were impacted by the raids.

According to a study by the Urban Institute, for every two adults apprehended, at least one child is negatively affected. Increased isolation and fear of separation creates an environment of toxic stress that manifests in a number of ways in a child’s behavior including problems sleeping, depression, anxiety, and an inability to focus in school due to fear of not seeing their parents after school.

According to another report released by the Center for Law and Social Policy (CLASP), even the possibility of separation can cause health problems—such as depression, anxiety, and toxic stress—which can lead to long-term developmental delays that seriously hinder a child’s ability to succeed in adulthood.

Immigration policies should be modified to prioritize the unity of families and allow discretion for parents and primary caregivers of minor children. In an effort to combat the stress felt by families who are separated due to immigration enforcement, Representative Roybal-Allard and Representative Torres of California introduced the Help Separated Families Act of 2018 (H.R. 5414). First Focus Campaign for Children has endorsed this legislation.

Immigration reform has been a heated topic for years, but the current polarization of our political climate has brought this debate once again to the forefront.

We urge Congress to remember the families involved in these decisions and the children who will be affected for a lifetime due to the trauma of needlessly being separated from their loved ones.


Why Medicaid Matters: Adopting a Child With Special Health Care Needs

| April 25, 2018 |

In a continuing series on the personal impact that recent legislative and administrative proposals to restructure or severely reduce Medicaid health care will have upon vulnerable children and families, this segment focuses on Medicaid for children with special health care needs who are adopted. As described in an earlier blog, Medicaid serves a critical need for many children with special health care needs, regardless of parental income. Children in foster care or adoptive families may have additional challenges in accessing the health care they need.

It is difficult to quantify the number of children waiting for adoption who have special health care needs. There is no consistent definition of “special needs” across states or the federal government. It has been estimated that on any given day, nearly half a million children are in foster care and at least one-third of those children have special needs. Some advocates and organizations argue, however, that all children in foster care have special needs due to the very factors that led to foster care itself.

Irrespective of the definition one uses, it takes a very special family to adopt a child with special health care needs. There are hundreds of thousands throughout the country. This is the story of one such family. It is a story of courage and perseverance. It is the story of a beautiful child who found a permanent and loving family.

It is also an instructive account of the critical importance of federal and state programs in assisting parents and families to adopt children with special health care needs; most significantly, the Medicaid program (a federal-state partnership, states guaranteed a minimum of 50% matching federal funds) and the Title IV-E Foster Care Program (states can claim limited federal funding for eligible expenses). When a child is adopted from foster care and eligible for Title IV-E, that eligibility provides adoption assistance as well as Medicaid coverage, regardless of family income, for that child until the age of 18, or in some cases, 21. This Medicaid coverage goes with the child to any state. Without Title IV-E eligibility, a child with special health care needs may or may not qualify for Medicaid, or a Medicaid waiver in a given state, such as the Katie Beckett waiver; he or she will not be considered a beneficiary who is guaranteed Medicaid health coverage in any state.

That difference is key to this story about the Carrigg family, a military family, covered under Tricare, and subject, as most military families, to frequent moves to different states. The availability of Medicaid coverage to any adopting family who might need, or simply want, to move to another state for employment or other reasons, is a key factor in the ability to financially afford the necessary care involved in adopting a child with special health care needs.

These costs can be enormous and ongoing. It is a critical issue we must address in making it easier, not harder, for parents to adopt children with special health care needs. As stated by Austin Carrigg, mother to two biological teenaged sons and her 5-year-old daughter Melanie who is adopted, she has a “heartfelt concern that many children are not adopted because of the cost of their medical needs.”

There is good reason for her concern. The Carrigg family’s experience also demonstrates what can be shockingly prevalent in our health care system, regardless of the requirements of the Americans with Disabilities Act – namely, ongoing health care discrimination against children and adults with disabilities.

 

MM: How did you learn about Melanie?

AC: We had been waiting to adopt a special needs child for 5 years. Melanie’s birth parents decided that they could not care for Melanie. They chose us after considering other potential families. We had several conversations about Melanie and her needs during that time. While Melanie was not in foster care, her birth parents did not feel they could parent her and she subsequently could not remain in their home, leaving adoption as the only option available.

 

MM: What was it like when you first brought Melanie home?

AC: I flew to Hawaii in early November 2012 to pick her up and fell in love with her from the first moment I held her in my arms. I had promised my son I would be back in time for his 10th birthday and we were.

Bringing Melanie home was wonderful and scary all at the same time as there were a lot of unexpected challenges. Her little stomach was as big around as she was tall so I made an appointment with the pediatrician for the day after we arrived home. Melanie has Down syndrome, a congenital heart defect (Complete AV canal), as well as Glycogen Storage Disease (GSD). This is a genetic metabolic disease that makes it difficult for her to store glycogen, similar to diabetes, causing low blood sugar and other symptoms. Melanie must eat frequently, foods high in protein and carbohydrates, while avoiding sugar. GSD can cause other complications, including an impact on her heart.

The pediatrician referred us to a cardiologist and we learned to our shock that three of Melanie’s ribs were broken. When he told us I remember sitting there, sobbing, trying to figure out how anyone could hurt my beautiful baby, and feeling helpless that I was not there to protect her. Melanie had to be admitted to the hospital so that an immediate investigation of her injuries, including the possibility of shaken baby syndrome. Finally, it was determined that she had likely gone into cardiac arrest at birth and during her resuscitation, hospital personnel had inadvertently broken three of her ribs, and had not properly documented it.

MM: Were you all able to begin adjusting to life at home at this point?

AC: It was Thanksgiving when we got Melanie back home. Almost immediately we received an urgent call from the hospital to bring her back – blood analysis had revealed her potassium levels were dangerously high and she was in severe congestive heart failure. She needed immediate open-heart surgery to repair her heart chambers and valves. While most surgeons want to wait until a child is at least six months old, and have had time to grow. Melanie could not wait. Her life was at risk.

But surgery is not cheap. As we met with the hospital’s finance department, they explained that we needed to put down a ten percent deposit before they could proceed —$100,000. We were inundated with forms outlining expected costs. Ultimately, the cost of saving my daughter’s life was one million dollars, and time was not on our side. We could not enroll her in TRICARE quickly enough — her life was literally at stake.

Then someone suggested we explore Medicaid as an option. She was hospitalized and as she was not officially adopted, she was considered, for legal purposes, to be a child with special needs and an orphan; she was thus eligible for Medicaid, and we immediately enrolled her.

Just 12 hours after discharge from this surgery, Melanie aspirated formula and was again hospitalized, this time with severe pneumonia. She spent Christmas and New Year’s in the hospital fighting for her life once again. Without her Medicaid coverage, her bills would have been astronomical. We had not had an opportunity to even begin her formal adoption when these crises occurred. She was finally discharged with oxygen to help her breathe and a G-tube (gastrostomy tube) to ensure there would be no danger of another aspiration.

 

MM: How did your lives go following Melanie’s heart surgery and subsequent hospitalization?

AC: My husband received orders that we were moving across the country while she was in the hospital and we were told to move despite the fact her medical team did not want her moved. The Army told us move with her or give her back; they didn’t care which but they would not stop the move. Clearly, we were never “returning” her, she is our daughter and we would give our lives for her. The move was grueling. I spent 5 days on Amtrak with her and her big brother because neither could be approved to fly for fear of a medical emergency mid-flight. We arrived in a new state and began formal adoption proceedings for Melanie; she was 5 months old at this time, still recovering but doing well. This required new home studies and extensive documentation. We had been foster parents before, so we knew the process. We applied for Title IV-E adoption assistance and were denied. The state told us that since Melanie had not been in foster care, she would not qualify for Title IV-E.

 

We discussed how Austin and her husband, Joshua, handled the news and decided to appeal this finding.

AC: Melanie needed Medicaid health coverage so that she could access all the care she needed. We were so in debt from all the expenses, and down to one family income since Melanie needed my care full time. While Tricare was our primary insurer, we were learning there were several costs, including Melanie’s very expensive and critical treatment for GSD, that Tricare did not cover. Those alone can be more than $1,000/month. Melanie had not officially been in foster care, but there were no other options for her with her birth parents. We were simply able to adopt her before she was sent to foster care, which was the best possible option for her at six weeks. We decided to appeal the decision denying her Title IV-E coverage, based on the federal guidelines, that do not explicitly require that a child be in foster care, but meet one of three special needs requirements; Melanie did meet one of those requirements – she could not be returned to the birth parent’s home.

It seems to be a common misconception that a special needs child must be adopted from foster care to qualify for Title IV-E adoption assistance and benefits. It took us nearly two and a half years, but we proved the guidelines do not require that under certain circumstances. We finally were able to adopt Melanie on my youngest son’s 10th birthday, just like we had originally brought her home on their big brother’s 10th birthday in November 2012. When we formally adopted her, we told him, “Today you get to keep your baby sister forever.”

Austin discussed the multiple challenges they faced with Melanie throughout this period of time. One in particular stands out.

AC: Melanie has Down’s Syndrome and is Deaf. Having Down’s Syndrome and being hard of hearing is common – being completely Deaf is not. I researched cochlear implants and believed it would be entirely possible for Melanie to have some hearing. She had surgery for an implant, and it was successful. Melanie made progress faster than her same-aged Deaf implanted peers. We met with the surgeon to discuss a second implant but were told that due to Melanie’s disabilities, “it wasn’t worth spending $60,000 on a device that they could give a typical child.”

This was shocking but in our experience, and that of many other parents, backed by research as well, it is not uncommon. Thankfully there are many more doctors who do not share this attitude, and at 4 she finally received her 2nd cochlear implant. Looking back on it now, I wish someone had sat us down and said “being Deaf is okay, she will gain more than she loses.” I wish they would have told me that she’d hate the implants and prefer to use ASL. But like any other parent you learn as you go, following your child’s lead.

 

MM: This article conveys just a very minor snapshot of all you and your husband have had to do to ensure Melanie’s care during the last 5 years. What lead you to adoption and how has it changed you as parents, as a family?

AC: We wanted a third child but we learned we were at risk of passing along a life-threatening genetic condition – that’s why we chose to adopt. When five years had passed and it didn’t seem to be in the cards, we accepted it. We were happy just being parents to our sons and decided to focus on them and furthering our careers. Then Melanie came along, and we realized how much we were missing. She has made us all better people. When your child may die, you realize what is really important in life. We hold our kids closer. Family is our number one priority. Careers don’t matter. I know my boys are going to be amazing men. The care and compassion Melanie has created in them is unbelievable. They fight often over which one of them Melanie will live with when we are gone, and who will protect her from the injustices she faces in her life.

My husband is amazing and I couldn’t do all I do without his help. We are 100% partners in everything. I know that many times having a child like Melanie tears marriages and families apart, but she has done the opposite for us. She’s brought us closer. We work together almost seamlessly when she needs us the most. A life- threatening situation pulls every member of this family into a team that works flawlessly together.

Melanie is the best thing that has ever happened to our family. Not because we don’t love our boys, but because she has changed us so fundamentally.

One of my sons has autism – our pediatrician said he has never seen a child with autism respond to another child the way he does with Melanie. It has taught him compassion in a way I don’t think anything else would have. I think for the first time in his life, someone was counting on him, not the other way around. He is proud of what he does for her, she depends on him and this has created greater meaning for him than anyone else in the family.

 

Today Melanie is a thriving, joyful and engaging 5-year-old who attends school, has friends, plays with her brothers, and generally speaking, lives a “normal” and very full life.

MM: Why do you advocate for changes in policy to help children like Melanie have the care they need, and also for parents like you to give children with special health care needs a permanent home?

AC: Melanie has made us so happy. She has given us so much, far more than anything we have had to “give up.” And to know there are so many children just like her, looking for families. And to know that those families do not adopt because they just can’t afford it is heartbreaking.

Some families decide to foster a special needs child. Not all are going to adopt – you actually have a greater guarantee of care as a foster parent. If a child remains a foster child, they have Medicaid and a foster care payment. If you adopt, you don’t have that same guarantee. That is not right.

The efforts to cut Medicaid are heartbreaking. The incentive to people to adopt is lessened.

I believe it should be straightforward and automatic – with none of the bureaucratic hurdles we had to jump through. Why would anyone think it is cheaper or better to pay a child welfare agency to make ongoing visits, etc., to a foster care family when that family may want to adopt but cannot afford the medical bills? We are still paying for the same health care for that child if they remain in foster care, except they get permanency and a sense of belonging in adoption.

If a child has special health care needs and their birth family cannot care for them, he or she should qualify for federal adoption assistance and Medicaid. Too many parents are fostering instead of adopting. Too many children are denied the permanence of a family for the very reasons we fought – and prevailed.


It’s Time to End Child Poverty —Here’s How

| April 18, 2018 |

A new report out of Washington University in St. Louis has found that the cost of child poverty to the U.S. economy was a whopping $1.3 trillion in 2015, which amounts to 5.4 percent of gross domestic product (GDP).

This is because child poverty in the U.S. remains high, with over 13 million children living below the poverty line. When children experience poverty, even for a short time, it can result in negative effects for their physical and mental health, nutrition, and educational attainment and achievement. All of these consequences are costly to our society, resulting in a loss of economic productivity and increased expenditures in our healthcare and criminal justice systems.

Yet recently we have seen harmful actions and proposals from Congress and the Administration that would further increase child poverty through weakening public assistance programs by imposing cuts, employment documentation requirements, irrational time limits, and other unnecessary government bureaucratic barriers.

Counter to these proposed harmful initiatives, members of the U.S. Child Poverty Action Group drafted Our Kids, Our Future: Solutions to Child Poverty in the U.S., a compendium of more than 20 papers that provide recommendations to significantly reduce child poverty and improve child well-being.

Together, the policy briefs included in Our Kids, Our Future demonstrate that, in order to make significant progress in reducing child poverty and addressing racial and ethnic disparities, we need a national commitment that involves coordination between federal, state, and local levels of government.

Papers in the compendium include recommendations on increasing access to affordable and quality child care and early childhood education, reducing the effect of poverty on student achievement and attainment, addressing the increase in child welfare cases due to the opioid crisis, increasing families’ access to housing assistance, retooling the federal homeless assistance system, creating a universal paid family leave program, reducing the gender wage gap, addressing unique barriers faced by children of immigrants, supporting family asset building, meeting the needs of low-income children with special healthcare needs, and more.

Our Kids, Our Future was released last week through a Congressional briefing sponsored by Congressman Ben Ray Luján (D-NM-3).

In his remarks, Congressman Luján stated “Poverty is the greatest threat to our kids…Congress must do more, because child poverty should not be a partisan issue!”

Congressman Ben Ray Luján speaks as the U.S. Child Poverty Action Group premieres the release of Our Kids, Our Future: Solutions to Child Poverty in the U.S. at a Congressional briefing on April 18, 2018

The U.S. Child Poverty Action Group couldn’t agree more. We know that reducing child poverty is not only the right thing to do, but it is costing our country $1.3 trillion a year.

Child poverty reduction is also necessary for a strong economic future. Solutions to child poverty are tied to economic gains that result in a strong and educated workforce, which benefit businesses, communities and, of course, children and families.

The U.S. Child Poverty Action Group is a coalition of child-focused organizations dedicated to reducing child poverty in the U.S. More information can be found at www.childpovertyusa.org. Follow us on Twitter at @CPAG_USA.