Failures in Federal Housing Policy Focus of Media Investigation, Hartford Concerns Highlighted

An NBC News investigation of the federal Department of Housing and Urban Development has found that more than 1,000 out of HUD’s nearly 28,000 federally subsidized multifamily properties failed their most recent inspection — a failure rate that is more than 30 percent higher than in 2016, according to an analysis of HUD records. When NBC broke the story last week of the agency’s dismal record of responding to conditions that at times have been described a “life-threatening,” the example cited most prominently was in Hartford.

The news report stated that “A federal housing inspection in February confirmed living conditions were abysmal … throughout the 52-unit Section 8 development known as the Infill apartments. The property scored only 27 points out of 100, far below the 60 points needed to pass the mandatory health and safety inspection.”  Infill is located in Hartford’s North End. 

“More than nine months after the inspection, federally mandated deadlines for action have come and gone, and residents say little has changed,” NBC’s Stephanie Gosk reported, despite “citations for exposed wiring, missing smoke detectors and bug infestations,” noted that “the Infill units racked up 113 health and safety violations — including 24 that HUD deemed ‘life-threatening.’”

“In one of Hartford’s poorest neighborhoods, a three-month investigation by NBC News found that HUD failed to comply with federal laws requiring prompt action against the owner of a property that authorities knew was unsafe, unhealthy and in disrepair, according to documents released through the Freedom of Information Act,” Gosk reported.

While the agency pointed out that 96 percent nationwide passed inspections, NBC reported that “HUD’s enforcement office, tasked with going after the worst landlords, now has the lowest staff levels since 1999, according to a federal watchdog.”

“In the case of Infill, though, HUD acknowledged that the landlord failed to deliver,” NBC News reported. “The owner provided certain assurances to our field folks that, in the end, did not happen,” HUD spokesman Brian Sullivan said in an email to NBC News. “That hasn't stopped the federal subsidies,” NBC News reported.

"It's a flow of money that continues to come," AJ Johnson, a local pastor who has helped the tenants organize, told NBC News.  “Whether it’s indifference or incompetence, the Trump administration’s failures in Connecticut and around the country cannot be excused. Someone must be held accountable,” said U.S. Sen. Chris Murphy, who led previous efforts to strengthen the HUD inspection process, NBC News reported. “Secretary [Ben] Carson owes it to these families to present a concrete plan for how he will make this better, and how he’ll make sure nothing like this ever happens again.”

Infill’s owner, meanwhile, is “set for years to come,” the NBC News report concluded.  “In July 2017, just seven months before the failed inspection, HUD renewed its contract with Isaacson for 20 years — a deal worth over $14 million.”

The NBC News investigation was reported, in addition to Gosk, by Suzy Khimm, Laura Strickler and Hanna Rappleye, and included interviews with numerous tenants of the property and other individuals in Hartford and Washington.

Marijuana Sales Begin Tuesday in MA; CT Expected to Consider Legalization in 2019

Massachusetts begins the sale of recreational marijuana on Tuesday, in Northampton and Leicester, as Connecticut looks ahead to a new Governor and new legislature, taking office in six weeks, with the addition of recreational sales on the agenda to complement a thriving medical marijuana program. Thirty-three states and the District of Columbia currently have passed laws broadly legalizing marijuana in some form.  The District of Columbia and 10 states -- Alaska, California, Colorado, Maine, Massachusetts, Michigan, Nevada, Oregon, Vermont and Washington -- have adopted the most expansive laws legalizing marijuana for recreational use, according to Governing magazine.  The Massachusetts law was approved two years ago, but retail sales have not begun - until this week.

Governor-elect Ned Lamont told Connecticut Public Radio listeners, just a few days prior to his election, that “I think legalizing marijuana is an idea whose time has come…and I’m gonna push it in the first year” of the new administration.  He added that “maybe we should tax this, regulate it in a serious way, put some of that money toward opioid treatment.”

Most recently, Michigan voters approved a ballot measure permitting adults age 21 and over to purchase and possess recreational-use marijuana. Vermont became the first state earlier this year to legalize marijuana for recreational use through the legislative process, rather than via a ballot measure. Vermont's law allows for adults age 21 and over to grow and possess small amounts of cannabis. However, it does not permit the sale of nonmedical cannabis. Some other state laws similarly decriminalized marijuana, but did not initially legalize retail sales.

The Connecticut General Assembly's Regulations Review Committee agreed last week that chronic neuropathic pain associated with degenerative spinal disorders is eligible for treatment with the drug, adding that to the list of approved conditions.  There are now 31 conditions that have been approved for adults and eight for patients under 18 that can be treated with medical marijuana. Minors can be treated for eight conditions.

There are currently 29,543 patients in Connecticut's medical marijuana program and 1,000 certifying physicians, according to published reports. In recent months, DCP has launched a database listing medical marijuana brands registered with the state and added eight new conditions to the program. The eight new conditions for adults added this summer include: Spasticity, or neuropathic pain associated with fibromyalgia; Severe rheumatoid arthritis; Postherpetic neuralgia; Hydrocephalus with intractable headache;  Intractable headache syndromes; Neuropathic facial pain; Muscular dystrophy; and Osteogenesis imperfecta.

Connecticut’s nine dispensaries and four growers are reportedly discussing adding more storefronts and growers in light of an increasing patient count.

Last month, Rhode Island’s Department of Health this week approved medical marijuana use for people who suffer from some severe manifestations of autism, most of whom are children.  But before doctors can recommend marijuana, the health department has implemented several safeguards "to ensure that patients are being treated safely." Seven other states have made autism a qualifying condition for medical marijuana, according to advocacy group #cannabis4autism: Delaware, Georgia, Louisiana, Michigan, Oregon, Minnesota and Pennsylvania.

At the University of Connecticut, Professor Gerald Berkowitz will teach students about marijuana growing, a burgeoning industry as more states legalize cannabis use for medical and/or recreational purposes. The UConn class — called "Horticulture of Cannabis: from seed to harvest" — is a lecture course, and it's attracted about 270 students who will begin studies in January, Hartford Business Journal reported this month.

In Colorado, the adult-use marijuana market continues to surge nearly five years after the launch of recreational sales in the state, according to a recent news report.  Through August 2018 – the most recent data available from the Colorado Department of Revenue – recreational marijuana sales topped $800 million and the state is on pace to surpass $1.2 billion by the end of the year. That would represent a 12 percent increase over total sales in 2017. As of August 2017, 498 recreational stores were licensed throughout the state; that number grew to 541 by September 1, 2018 – a 9 percent increase

Accelerating Efforts to Prevent Suicide in CT as Numbers Climb

The Centers for Disease Control and Prevention (CDC) released a report this year which indicated that suicide rates nationally jumped by 25 percent since 1999, a finding that “shocked” even experts who believed the rate had been flat. Each year, more than 41,000 individuals die by suicide, leaving behind their friends and family members to navigate the tragedy of loss, according to the National Alliance on Mental Illness. Connecticut's rate, 9.7 deaths per 100,000, rose 20 percent during that time, and 49 states saw an increase, according to the CDC. Connecticut’s suicide rate, is ranked number 46 in the country.

Suicide is the 10th leading cause of death in the U.S. with one occurring on average every 13.3 minutes.

For every suicide, there are 30 people who made the attempt, Dr. James F. O'Dea, vice president of the Behavior Health Network of Hartford Healthcare, recently told the Meriden Record-Journal.  The U.S. Health Resources & Services Administration reports that “approximately 45% of suicide victims had contact with primary care providers within 1 month of suicide.”

“Connecticut suicide rates may have not have increased as much in comparison to other states, but isn’t the real question, ‘Why is it increasing at all?’” Luis Perez, president and CEO of Mental Health Connecticut, told The Hartford Courant earlier this year.

“It’s been well-researched that most people who die by suicide do so because they want the pain to stop — and they don’t see any other way,” Perez said. “Prevention is critical. Knowing the safe and right way to talk to someone who may have thoughts of suicide and letting people know they are not alone, that millions of people struggle with suicide ideation is key.”

According to the state Department of Public Health, approximately 31 percent of victims had a history of treatment for mental illness and 42 percent had previously attempted or thought about suicide or disclosed their intent to commit suicide. The CDC offers 5 steps to help someone at risk: 1. Ask. 2. Keep them safe. 3. Be there. 4. Help them connect. 5. Follow up.

The U.S. government’s anti-bullying website, stopbullying.com, points out that “many issues contribute to suicide risk, including depression, problems at home, and trauma history. Additionally, specific groups have an increased risk of suicide, including American Indian and Alaskan Native, Asian American, lesbian, gay, bisexual, and transgender youth.”  The site indicates that “this risk can be increased further when these kids are not supported by parents, peers, and schools. Bullying can make an unsupportive situation worse.”

Matt Riley, Chief Operating Officer of the Connecticut-based Jordan Porco Foundation, recently told WTNH-TV that suicide is the second leading cause of death for Americans ages 15 to 24. One in ten college students and one in five high school students consider suicide. Young people considering suicide are most likely to talk to peers, so the Jordan Porco Foundation focuses on peer-to-peer outreach and awareness, with a series of successful program initiatives on college campuses in Connecticut and across the country.

In recent years, a new student-driven primary prevention program was piloted to help high school students develop positive coping skills and enhance protective factors in preparation for life beyond high school. Schools and organizations participating included Manchester High School, Immaculate High School in Danbury, Enfield Public Schools, Capital Preparatory High School in Hartford, Institute of Living in Hartford, Jewish Family Services in West Hartford, Wilton High School, Boys & Girls Club of Bristol, and Guilford Youth & Family Services.

Numerous organizations across Connecticut offer Mental Health First Aid, an 8-hour training to teach participants how to help someone who is developing a mental health problem or experiencing a mental health crisis. The evidence behind the program demonstrates that it helps trainees identify, understand and respond to signs of mental illnesses and substance use disorders.  The course is often offered to participants free of charge.

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Westport Earns Top 20 Ranking Among Nation's Small Cities; Shelton Reaches Top 100

For those looking to identify the best small cities in the nation - with populations between 25,000 and 100,000 – the search may not need to go further than Connecticut, according to a new analysis. Westport was the lone Connecticut community to reach the top 20 nationally, at number 19, with Shelton also earning a place in the top 100, at number 85, and Norwalk (#146), Trumbull (#157) and West Hartford (#159) also reaching the top 200.

The analysis, by the financial services website WalletHub, was based on 40 key indicators of livability, ranging from housing costs to school-system quality to restaurants per capita.  The indicators were grouped into five categories – affordability, economic health, education & health, safety, and quality of life.

On those scales, Westport was ranked 20^th in education & health, 65^th in safety, 82^nd in economic health, 258 in affordability and 595 in quality of life.  Other than Westport, no Connecticut community reached the top 30 in any overall category.

"Of the 22 Connecticut cities analyzed, 18 ranked in the top half. This is an indication that many Connecticut communities are able to offer high quality of life at low living costs," said WalletHub analyst Jill Gonzalez.  "Westport in particular made it to the top of our ranking due to several factors. The city has a very healthy economy, demonstrated by the fact that its residents have one of the highest median household incomes, and had absolutely no personal bankruptcies filed in the past year. It also has one of the lowest crime rates in the country."

Westport tied for fourth in the U.S. for the highest percentage of the population with a high school diploma or higher.  Trumbull had the second lowest percentage of population in poverty in the U.S., just behind Plainfield, lllinois.

Just outside the top 200 communities, were Stratford, Milford, Middletown, Danbury, Newington, Torrington, Bristol, Manchester, and Naugatuck.

Nationwide, among the 1,200 communities included in the analysis, leading the way were Leawood, KS; Carmel, IN; Princeton, NJ; Brentwood, TN; Milton, MA; Needham, MA; Los Altos, CA; Littleton, CO; Newton, MA; and West Fargo, ND.  Massachusetts placed three communities in the top 10 and a total of six in the top 20.  Also reaching the top 20 from the Bay State were Arlington, Melrose and Wellesley.

CT Residents Concerned About Healthcare Costs, Suggest Policy Actions

Connecticut residents are worried about paying for health coverage and care, and are delaying or skipping recommended medical treatment and tests. They also support bold solutions across party lines, according to policy briefs released this month by Universal Health Care Foundation, based on the results of a statewide survey conducted in partnership with Altarum Institute’s Healthcare Value Hub. The poll found that state residents:

• Avoided or delayed treatments and tests, cut pills in half or did not fill prescriptions because of cost concerns
• Worry about affording health care in the future
• Had difficulty navigating our complex health care system, including dealing with surprise medical bills

The survey revealed that residents are not satisfied with the current health care system: 80 percent agree or strongly agree that “the system needs to change.”  When given more than 20 options, they focused on the high prices charged by industry players, citing most frequently as a “major reason” for high health care costs:

• Drug companies charging too much money—81 percent
• Hospitals charging too much money—74 percent
• Insurance companies charging too much money—74 percent

When asked about possible strategies for tackling high health care costs, residents expressed strong support, across party lines, for government to take action.

• Show what a fair price would be for specific procedures – 95 percent
• Authorize the Attorney General to take legal action to prevent price gouging or unfair prescription drug price hikes – 94 percent
• Set standard payment to hospitals for specific procedures – 89 percent
• Set standard prices for drubs to make them affordable – 89 percent

The survey found relatively little statistical difference in the responses of individuals indicating their political party affiliation as Democrat, or neither.

In the poll of 900 Connecticut adults, nearly 9 in 10 people (88%) who take prescriptions regularly worry they won’t be able to afford their medication.  And 20 percent reported that they were so worried about drug prices that they did one or more of the following:  not fill a prescription, cut pills in half, or skip a prescribed dose. 

Half of Connecticut adults indicated that they experienced a problem with health care affordability in the past year, and nearly as many, 43 percent, delayed or did not get care due to cost, with one-third indicating that they delayed going to the doctor or having a procedure done.

Universal Health Care Foundation is supporting IVote4Healthcare, a nonpartisan voter registration, education and engagement effort, with Protect Our Care CT, to highlight those findings and changes in the health care system.

Report Provides Guidance for School Districts and State Policymakers to Address Students’ Trauma & Mental Health Needs

It is described as a “framework to advance policy and strategic school district planning to more effectively address the mental health and trauma needs of students and promote student success.”  A new report, driven by research highlighting the connection between mental health and educational outcomes, is aimed at school districts looking to increase integration of student mental health services and supports. The 40-page report, developed by The Child Health and Development Institute of Connecticut (CHDI), a subsidiary of the Children’s Fund of Connecticut, in partnership with the national Center for School Mental Health at the University of Maryland, provides a framework for policymakers and school districts interested in improving outcomes by addressing the mental health and trauma needs of students. The report indicates that “in a typical classroom of 25 students, approximately five will meet criteria for a mental health disorder but most of them are not receiving appropriate mental health treatment or support. Among those who do access care, approximately 70 percent receive services through their schools.”

Connecticut is cited as an example of how states can promote collaborations within and across the behavioral health, education, and juvenile justice systems to provide an array of trauma-informed, evidence-based, and tiered services for students.  It notes that school principals indicate that mental health is one of the most challenging unmet needs among their students and schools are increasingly seen as a critical setting for the delivery of mental health services.

The report provides “a blueprint and resources to guide state policymakers and school district leaders," including:

• an overview of core components of the Comprehensive School Mental Health
• Systems (CSMHS) model structured around family-school-community partnerships and the delivery of evidence-based mental health services within a multi-tiered system of supports;
• examples of best practice strategies to develop, implement, and sustain CSMHS;
• a model for a trauma-informed multi-tiered system of supports for school mental health;
• creative approaches to advance policy and funding structures to sustain CSMHS; and
• recommendations for state-level policymakers, districts, and schools to advance a comprehensive statewide system of school mental health to improve outcomes for all students.

“Approaching student mental health with a comprehensive lens that integrates health promotion, prevention, early intervention, and more intensive treatments leads to better school, student and community outcomes," said Dr. Sharon Hoover, Co-Director of the Center for School Mental Health at the University of Maryland and lead author of the report.

National prevalence rates indicate that approximately 20 percent of children meet criteria for a mental health disorder; however, many children’s mental health needs are not identified and the majority of children with identified challenges do not receive services, the report explained.  Among those who do access care, approximately 70 percent receive services through their schools. Linking children to services through their schools reduces many traditional barriers to care. School mental health services are also associated with higher completion rates than treatment delivered in traditional outpatient community-based settings.

The report uses Stamford Public Schools (SPS) as a” local model for improving outcomes by adopting a trauma informed approach to school mental health.” CHDI began working with SPS in 2014 to conduct a review of the district’s mental health system and to develop a plan to enhance trauma-informed mental health services district-wide.  That plan was subsequently implemented, and “lessons learned in Stamford are being used to engage other Connecticut districts to … integrate school and community-based mental health services, and promote quality and sustainability of these enhancements.”

“Schools are well positioned to promote wellness and social emotional competence for all students, as well as identify and address mental health concerns for students in need,” said Dr. Jeana Bracey, Director of School and Community Initiatives at CHDI and report co-author. “However, the responsibility is not on schools alone to integrate or fund these supports. This framework helps districts connect to and collaborate with Connecticut’s robust network of trauma-informed state and community-based services and programs so all students can be successful.”

The report concludes that a “systematic and streamlined partnership between families, schools, and communities to support a continuum of mental health supports in schools can lead to better behavioral health for all students, as well as increased access, earlier identification and intervention, and ultimately better outcomes for students with mental health challenges.”

[Visit wwws.chdi.org to download the IMPACT report or to read more about CHDI’s work related to school mental health.]

New Haven, Bridgeport at Bottom of Ranking for Disability-Friendly Cities

Connecticut’s two largest cities are not particularly hospitable for individuals with disabilities, according to a new national analysis.  New Haven and Bridgeport are at the bottom of a list of 182 cities that were included in the review, released this month to coincide with National Disability Employment Awareness Month The personal-finance website WalletHub compared the largest U.S. cities – including at least two from each state - across 31 key indicators of disability-friendliness. The data set ranges from wheelchair-accessible facilities per capita to rate of workers with disabilities to quality of public hospital system. The 31 indicators were grouped into three categories:  Economy, Quality of Life and Health Care.

The report on 2018’s Best & Worst Cities for People with Disabilities placed New Haven at the bottom of the list, and Bridgeport just two positions higher.  They were the only Connecticut cities evaluated in the analysis.

According to the Centers for Disease Control and Prevention, one in four U.S. adults, or 61 million total, have a disability that impacts their major activities. And among Americans age 65 and older, that number rises to two in five. In 2017, nearly 5.7 million people with disabilities were employed.

New Haven, which ranked number 182 overall, ranked 180 in Economy, 134 in Quality of Life and 173 in Health Care.  Bridgeport, just above New Haven at number 179 in the overall ranking, placed 164 in Economy, 128 in Quality of Life and 163 in Health Care.

WalletHub analyst Jill Gonzalez explained that among the metrics dragging down New Haven's overall ranking was the second lowest employment rate for people with disabilities, at 71.03 percent. This refers to the civilian non-institutionalized population aged 18-64 in the labor force. Other areas where New Haven ranked poorly, Gonzalez pointed out, were the share of people with disabilities living in poverty, which is almost 37 percent, and the relatively low number of family doctors and general practitioners per capita.

Bridgeport ranked as the fourth worst city for people with disabilities. One of the issues driving the ranking, Gonzalez said, was similar to New Haven's - a low employment rate for people with disabilities, at 74.28 percent. The other issues are mostly related to the quality of life.

“Bridgeport has one of the lowest number of wheelchair accessible art, entertainment and recreational establishments per capita, and a large number of older buildings with little to no access for disabled residents," Gonzalez said.

The analysis found that only Detroit had a lower employment rate for individuals with disabilities that New Haven.  On the overall list, Providence, RI was just one notch above New Haven, at the bottom of the rankings.

The cities ranked at the top of the list were Overland Park, KS; South Burlington, VT; Sioux Falls, SD; Scottsdale, AZ; Columbia, MD; San Francisco; Rapid City, SD; St. Louis, MO; Bismarck, ND; and Grand Rapids, MI.

Data used to create this ranking, according to WalletHub, were collected from the U.S. Census Bureau, Bureau of Labor Statistics, Department of Housing and Urban Development, Council for Community and Economic Research, Centers for Disease Control and Prevention, National Center for Education Statistics, Centers for Medicare & Medicaid Services, Trust For Public Land, Genworth Financial, United Cerebral Palsy, WalkScore, Yelp, Rails-to-Trails Conservancy, Affordable Housing Online, Kaiser Family Foundation, Eligibility.com, Redfin and WalletHub research.

Housing and Health - Foundations Fund Research in CT to Examine Relationship

Housing and health are increasingly the focus of study, to better determine how one impacts and influences the other.  Foundations at the state and national level are among those devoting resources in Connecticut to seek answers that can ultimately guide future public policy. With a $125,000 grant from the Connecticut Health Foundation, the Open Communities Alliance will work to create better links between housing and health care and set the stage for a two-year pilot program to enable interested families of children with acute asthma to move to healthier neighborhoods.

The “Healthy Housing Vouchers” project aims to use housing policy to improve health outcomes for low-income families and reduce health disparities, tying together clinical and nonclinical factors that affect people’s well-being. 

The Open Communities Alliance project will create a streamlined process for low-income families of children with asthma to help them access affordable housing in healthier communities if they choose. It will include referrals, counseling on the impact of environmental conditions on health, help identifying potential rental locations, and assistance with security deposits, moving expenses, and supportive services as they adapt to a new community. The initial participants in the pilot program will be low-income families who receive government-funded housing vouchers and have children with acute asthma.

The Connecticut Health Foundation will also be providing a $100,000 grant to support Connecticut Voices for Children’s work to promote policies that advance health equity for children and families. The work will include conducting policy research, producing educational materials and analyses to inform policymakers about issues affecting children and families, bringing together state agencies and advocates through the Covering Connecticut’s Kids and Families Coalition, and participating in state-run councils to represent research-based policy solutions.

These projects are among  11 awarded a total of $535,000 - announced this month - by the Connecticut Health Foundation, based in Hartford.  It is the state’s largest independent health philanthropy dedicated to improving health outcomes for people of color.

Earlier this year, the Connecticut Data Collaborative and the Liberal Arts Action Lab were awarded a 500 Cities Data Challenge grant by the Urban Institute and the Robert Wood Johnson Foundation. The joint proposal was one of 10 selected from a large competitive pool of applications submitted by organizations from cities across the United States.

The one-year $148,000 grant will support local research and educational outreach on housing conditions, health outcomes, and neighborhood disparities in the capital city of Hartford.

The Connecticut Data Collaborative is a nonprofit organization focused on providing public access to data, creating an ecosystem of data users, and increasing data literacy. The Liberal Arts Action Lab, launched in early 2018 by Trinity College and Capital Community College, investigates problems posed by Hartford community partners, with teams of undergraduate students and faculty fellows who conduct semester-long research projects to strengthen the city.

The Urban Institute and the Robert Wood Johnson Foundation designed this challenge grant to encourage communities to delve into the 500 Cities open-access dataset, to design innovative solutions on social factors that influence health, and to guide local organizations on how to effectively use neighborhood-level data. The broader goal is to promote more comprehensive cross-collaborative approaches to foster a broader “Culture of Health” in urban areas.

CT Office of Early Childhood Receives Global Recognition for Effective Communication

The Connecticut Office of Early Childhood (OEC) – a state agency that didn’t exist just over five years ago - has earned global recognition for success and innovation in serving the state’s youngest children and their families. The agency was chosen to receive the “Future of Feedback Award” at the annual Feedback Summit in Washington, D.C.   The award was presented last week to OEC Commissioner David Wilkinson for his agency’s efforts at effective listening to the people it serves and the nonprofit providers who serve them.

“The Office of Early Childhood is honored to be recognized for its efforts in communicating effectively with Connecticut’s families and providers, and for finding strategies to meet their needs,” said Commissioner Wilkinson. “The parents we serve and the community providers we support are the best experts in what they need to succeed, but too often they don’t have a seat at the table.  OEC is trying a new approach to put parents and our hardworking providers at the center of our policymaking.  We’re saying, ‘nothing we plan for you should be done without you.’’

"Connecticut’s Office of Early Childhood is pioneering innovative ways of both listening and acting.  OEC’s outreach to families – and frontline service providers – is creating conversations about what matters most, and what they can all do together," said Dennis Whittle, Co-Founder of Feedback Labs and GlobalGiving.

Feedback Labs, the organizer of the Summit, is a global network of over 400 leading aid, philanthropy, and governance organizations around the world.  Feedback Labs was conceived in 2013 and launched in connection with the Obama White House. Whittle also co-founded GlobalGiving, a leading marketplace connecting social, environmental, and economic development projects to individual and corporate donors. Since its inception GlobalGiving has facilitated $335 million in funding to over 20,000 projects in 170 countries.

Established in 2014 through a bipartisan effort of Gov. Dannel Malloy and the legislature, OEC oversees and funds Connecticut’s early childhood programming – including child care, pre-K, early intervention for children with developmental delays, and family support services for at risk families – components that once were housed in five disparate state agencies.

Among the 10 largest state agencies in Connecticut, OEC’s goal is to keep the state’s children safe, healthy, learning and thriving. Through its innovative feedback efforts, the agency is acting on evidence that engaging providers and parents in policymaking yields better results.  Officials said that the agency combined data from 1,700 family surveys, another survey shared with all providers in the state, and 400 community and provider meetings in order to build a draft plan to transform the ECE system in the state, which serves 200,000 children.

Wilkinson added that “An award like this is an encouraging validation of our efforts to listen to families and providers, and then do all we can to act on their advice.  We believe that by listening and responding, we will provide better, more effective services for Connecticut families with young children – and in so doing help create a brighter future for the state.”

"OEC’s approach contains key ingredients of more responsive, innovative, and effective government.  OEC’s leadership in asking for and responding to feedback has the potential to spread widely through the public sector,” Whittle added.

“Child care centers work hard every day for children,” Said Dr. Monette Ferguson, Executive Director of ABCD, Inc., a nonprofit operating several leading child care centers in and around Bridgeport. “Usually the state tells us what to do and by the time we share any concerns, it’s too late.  I am not used to a state agency asking what I think before it acts.  It’s good to feel heard and to see OEC acting on our advice.”

David Wilkinson was named Commissioner by Gov. Malloy in April 2017 to serve as the second Commissioner of the state’s Office of Early Childhood (OEC). He previously served as Director of the White House Office of Social Innovation and Civic Participation under President Barack Obama. While at the White House, Wilkinson worked closely with the Malloy Administration on signature early childhood efforts, including a first-of-its-kind initiative – scaling a program proven to reduce parental substance use and child welfare interaction – for which the administration has achieved national acclaim.  He has also served as an advisor to the Yale Child Study Center, a leading collaborator with the state and its early childhood service providers.

Christine Johnson-Staub is the Interim Director of Child Care and Early Education at CLASP, a 50-year-old national nonprofit based in Washington, D.C., that focuses on shaping policy to support families living in poverty. She said, “OEC’s approach to setting its policy direction was unique because not only did it build on input from the community and existing research and data, but it went back to a wide range of impacted people, including parents, providers and other stakeholders, to make sure they got it right.”

“Parents and child care providers know the challenges facing the early care system better than anyone but rarely does anyone from state government ask our opinion,” said Merrill Gay, Executive Director of the nonprofit Early Childhood Alliance, a state consortium of providers and advocates. “That's why it was so refreshing to have the Office of Early Childhood ask us: ‘What are the pain points?  How do we make this system work better for you?’  I'm really excited to see OEC now turning that agenda for improvement into concrete action to better serve children and families.”

The strategy of communicating successfully with a target audience, and then acting upon that communication, is known as a “feedback loop” – an approach widely studied and increasingly appreciated by thought leaders, initially gaining traction in international development, but seen to have powerful implications for advancing more responsive, cost-effective and impactful government services in the US. The 2018 Feedback Summit was attended by over 150 feedback pioneers and leaders from around the U.S. and the world.

“They speak. We listen. We make change. It’s about being responsive to the needs of the young children in our state and, of course, their parents and caregivers,” Wilkinson said.  To contact the Office of Early Childhood, visit www.ct.gov/oec or call (860) 500-4412.

CT's Rare Disease Report Card Reflects Good Grades, Not-so-Good Grades

Thanks to innovative new treatments, diseases that were once fatal are now being treated as chronic conditions. But these breakthrough treatments will be out of reach for many patients, according to the National Organization for Rare Diseases, because health plans are using deductibles and coinsurance to shift more of the cost of medication onto the patients who rely on those treatments. The national organization, which is headquartered in Danbury and Washington, DC, explains that taken together, those out-of-pocket costs are outpacing wages, and patients are left struggling. To assist patients who find themselves in this difficult situation, several states have passed legislation mandating a limit on out-of-pocket costs for medications. These limits can be applied in different forms, such as a per-drug cap or by mandating a copay-only structure in certain health plans.  Those are just some of the areas of particular interest to NORD, which advocates for patients – and their families – facing the challenges of rare diseases.

What is a rare disease? Any disease, disorder, illness or condition affecting fewer than 200,000 people in the United States is considered rare. It is estimated that 7,000 rare diseases exist, and fewer than 500 have FDA-approved treatments.  Patients with rare diseases are frequently misdiagnosed or undiagnosed. Currently, only 5 percent of rare diseases have treatments, NORD points out.

A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new report released by the the NORD Rare Action Network® (NORD RAN). The 2018 “State Report Card” indicates that progress in several areas of health policy is slow, according to the report.

The third annual edition of the State Report Card rates states on the strength of policies including coverage of medical foods and newborn screening, prescription drug cost-sharing limits, policies supporting biosimilar prescriber communications, protections against step therapy protocols, and the establishment of rare disease advisory councils. New this year, according to NORD, the report also looks at Medicaid Waivers (including proposed work requirements, lifetime limits, drug formulary restrictions, and other proposed changes to benefits), storage and research consent for dried blood spot samples used in newborn screening, and state Right-to-Try laws.

Connecticut earned grades all across the scale - three A's and four B's, as well as three C's and two F's.   Overall, the report found nationally that:

• Fifteen states earned an F for failing to mandate adequate coverage of medical foods
• Thirty-six states earned an F for failing to enact prescription drug cost-sharing limits, despite third-party analysis showing these cause little to no impact on overall plan premiums for all beneficiaries
• Newborn screening has saved tens of thousands of lives, yet more than half of states fail to meet federal recommendations
• Fifteen states (including Connecticut) earned an A or B for protecting patients against step therapy, a procedure by which insurers (public or private) interfere with and delay appropriate care for patients that ultimately increases costs

“The intent with this report is to share valuable information that will enable advocates to affect change in their state,” said NORD Director of State Policy, Tim Boyd. “Our goal is to provide actionable steps for states that will improve people’s lives, so the report presents findings as well as tools for individuals to act on.”

Under the Affordable Care Act, many people with rare diseases can now access affordable health insurance. However, NORD officials point out, some insurance policies place orphan therapies on the so-called “specialty-tier” of a drug formulary. For drugs placed on this tier, enrollees often must meet cost sharing requirements that can be as much as 50% of the actual cost of the medication.

Later this month, NORD marks its 35^th anniversary with a Summit in Washington, DC.  A 501(c)(3) organization, NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 280 patient organization members,  is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.