We would like to include a personal story that demonstrates the importance of advocacy from an individual, family member, or caregiver in each of the toolkit topic areas.

For this project, ‘advocacy’ can include any example of a time when you or your family communicated a need, shared your story, or took steps to get something you wanted or needed.

Do you have a story to share about advocating in one of the following areas?

• Youth Leadership
• Transition to Adulthood
• Insurance and Financial Assistance
• Communicating about Your Health
• Access to Health Care
• Accessible Communities

To have your story included in the advocacy toolkit for individuals and families, please send a 1- to 3-paragraph summary to Sharon Romelczyk, Program Manager at sromelczyk@geneticalliance.org. Please only include information you wish to be shared, including any and all names or other identifying information.

If we include your story on the toolkit, we will contact you to let you know your story has been selected. Please let us know if you have any questions about the stories, how they will be used for the toolkit, or the toolkit in general. Thanks!

Family Voices Colorado is now accepting applications for a Marketing & Outreach Associate through AmeriCorps VISTA. See the VISTA Job Description 2013, or apply online at My AmeriCorps (you must create an account and log in to the site). Application deadline is May 17, 2013.

A recent meeting with families, advocates, and Medicaid executives captured both the concerns of families and the reluctance of state officials to stop using the tool without another plan in place, as described in this week’s Westword article and a March 27 article in the Colorado Springs Independent. Family Voices staff member Sam Murillo has been part of ongoing conversations in the disability community, and Susan Hogarth shared her experience as the mother of a “high-functioning” child who needs constant supervision, yet who is only granted 3 1/2 hours a day of paid care through the assessment.

Colorado Medicaid officials maintain that the tool is an improvement on past practices that did not adequately or consistently document how decisions about home health care needs were made. But as advocates, we are concerned that the state has mended their economic troubles at the expense of hundreds of families of children with disabilities, who are now facing their own economic crises.

As part of our ongoing work to bring the voices of families before legislators, state administrators, and other policy makers, Family Voices Colorado is teaming up with other disability advocacy groups to gather stories of families affected by this change. If your family has experienced parent CNA hours and income reduced, or other harmful effects of the use of the Pediatric Assessment Tool, please email pediatricassessmenttool @ gmail.com or call 720-263-7413 so we can lift up your voice as well.

UPDATE: Watch this video (5:42) to hear family caregivers talk about what it means to them to care for children and grandchildren with special health care needs in their own home.

A medical home is not a residential facility; it’s not even a building. Rather, it is an approach to health care that is comprehensive, coordinated, family- and patient-centered, accessible, and committed to quality and safety. (Learn more at the Colorado Medical Home Initiative.)

Sounds ideal, right? Like what you’d look for in a primary care office, regardless of your age or level of health care needs? And while every provider seeks to do their best in providing the kind of care that patients and families deserve, the medical home certification process helps by identifying specific benchmarks and practices that improve the quality of care and the patient experience, assessing both staff and family perspectives on how well those benchmarks are currently implemented, and then supporting the clinic or office or hospital department in taking steps to improve in areas that are assessed less positively.

Since 2009, Family Voices Colorado has helped certify more than 2,000 practices, from private family and pediatric practices to school-based clinics, federally qualified health centers, mental health providers, and more. In the course of that work, our staff have met tens of thousands families and thousands of providers; conducted and analyzed close to 32,000 family surveys and 20,000 staff surveys; and traveled more than 30,000 miles across the state!

Now that our contract has ended, we are moving into different approaches to our ongoing work of increasing access to and quality of health care for all children, especially those with special health care needs. Without wanting to be too mysterious, we’re not quite at liberty to describe the details of these new programs yet, but keep an eye out for some announcements in the next month or two!

Susana Herrera and Suzette Elledge, two of Family Voices Colorado’s Medical Home certification staff

Tremendous thanks go to Suzette Elledge, our Medical Home Project Coordinator; Susana Herrera, Medical Home Navigator; Colleen Roahrig, Western Slope Coordinator; and other staff who have supported the program over the years. Together, they have helped make sure that more children across the state – both those with special health care needs and those with typical needs – have access to a medical home, which leads to both cost savings and improved health outcomes. Thank you for your commitment to this important work!

If you are starting to think about summer plans for your child with special health care needs, we have compiled a list of camp options in Colorado that may be suitable. You may also want to check out other resources below for accessible playgrounds and hiking trails. If you have any questions about accessing community resources or navigating service systems related to health care and disabilities, please feel free to contact us, 303-733-3000 or 800-881-8272, and we’ll be glad to get you connected.

• Fast Fact – Camp Resources 2013 (updated 4/22/13)
• National Camp Listing, from the National Dissemination Center for Children with Disabilities (NICHCY)
• Accessible Playgrounds in Colorado
• Accessible Trails in Colorado

And if your child is interested in baseball, consider Adaptive Baseball with Sports Made Possible, which empowers kids of differing abilities to get out and enjoy playing the game of baseball in its purest form.

Know of other resources we should include here? Email communication (at) familyvoicesco.org.

April is Autism Awareness Month

What is autism spectrum disorder (ASD)?

Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors…. ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.

~ From Autism Speaks website

Autism is sometimes classified a developmental disability, other times considered linked with mental health concerns. These diverging professional views can complicate health insurance claims if a given policy provides limited coverage for mental health or behavioral health treatment, but would cover a diagnosis that falls under the category of a “neurological condition” with a physical basis or origin.

Jake & Josh are the sons of Family Voices staff member Suzette Elledge, and both have a diagnosis on the autism spectrum

If you have had difficulty getting access to or coverage for treatment (including ABA therapy) for your child with autism, please call Family Voices today, 303-733-3000 or 800-881-8272, to speak with one of our experienced Family Navigators. We can’t guarantee coverage, of course, but we can help you understand your options within whatever private or public health insurance plan you have.

More fact sheets & basic information about autism:

• A Parent’s Guide to Autism Spectrum Disorder, National Institute for Mental Health
• Centers for Disease Control & Prevention (CDC)
• National Dissemination Center for Children with Disabilities (NICHCY)
• National Institutes of Health
• Disability Scoop news articles related to autism

Webinars from Health Resources and Services Administration (HRSA) (1 hour each)

• Autism Spectrum Disorders: Family Support and Involvement
  When: Thurs, April 4, 12:30pm EDT/10:30am MDT. Register
• Expediting Detection of Autism Risk and Intervention Access
  When: Mon, April 8, 1pm EDT/11am MDT. Register
• Screening, Early Diagnosis, and Early Intervention
  When: Wed, April 24, 2pm EDT/12pm MDT. Register

Colorado & National Resources

• Autism Society of Colorado: resources for families with a recent diagnosis
• JFK Partners, providing evaluations, early intervention, treatment, and training related to autism spectrum and developmental disabilities
• Colorado Moms post on World Autism Day
• Autism Society
• Autism Speaks
• Autism Research Institute
• Family Voices Colorado on Pinterest – we have boards on Working with Children with Special Needs, Hope & Inspiration, Real Families/True Stories, Infographics, and more!

Susan Hogarth and her son, Jake

Susan Hogarth, whom you may remember from our November family story, recently joined the Family Voices Colorado team as the new Pediatric to Adult Health Care Transitions Navigator. In addition to learning the ropes of the Family Voices approach to family navigation support, Susan took a lead role in planning for Hearts on Fire 2013.

Susan was first introduced to Family Voices in April 2008, through the Arc of Jefferson County’s Mobilizing Families training program. She explains, “We were struggling with insurance denials for therapy for our son, Jake, and classification of developmental delay. The staff at Family Voices helped during the appeal process, attending conference calls with insurance agents and human resources. Family Voices provided the resource of an attorney who worked pro bono, resulting in the case being overturned and re-classification of disability such that all services were covered.”

In July 2012, Susan sought the help of Family Voices once again, this time with the application for the Medicaid Buy-In for Children with Disabilities, as Jake was on the CES waiver waitlist and not receiving Medicaid. He was approved for the Buy-In, and now receives the benefits of Medicaid coverage – including several therapies and other services not previously available – for a relatively low monthly premium.

Susan’s professional background is as a consulting actuary, but her passion was to leave that 20-year career to work with a non-profit, helping families of children with special healthcare needs. That dream came true in January 2013, when Family Voices hired Susan as a Transition Navigator. She tells us,

“The combination of my professional background as an actuary in the pension and healthcare benefits arena, and my personal experience as a mother of a disabled child with special healthcare needs, served as a perfect fit.  I have battled with insurance companies, spent hours in the hospitals, doctors office, therapy visits, durable medical equipment fittings, moved to other states thinking it was ‘better somewhere else!’ (which is a misconception as Colorado is one of the most well-educated states, and providing state of the art services including a high level of knowledge for technology), spending hours with the schools and IEPs, etc., just like many of the families we serve.

“I hope to provide some comfort to families that there is hope, and I can help them navigate the systems that all parents of children with special health care needs have to face on a daily basis. Colorado is stepping up to the plate, showing their support for the disabled community through the recent news relating to legislative budgets to include additional funding for individuals with disabilities currently on waitlists.

“It is exciting to work for Family Voices during this time, watching it grow into leader of navigation support in the community.”

We are glad to have Susan on board! Stay tuned for an announcement coming very soon about a new tool for families, health care providers, and other professionals: a Transition Guide that offers resources and tasks for each stage from age 10 through mid-20s!

In our work to improve access to and quality of health care for children and youth with special health care needs and their families, we spend a lot of time telling stories: the stories of obstacles and challenges that real families face as they try to navigate the often confusing systems that are supposed to provide the services they need, from public and private health insurance to social security, disability services, and education, as well as their triumphs and joys.

Stories are powerful: they can paint a picture, convey struggle and emotion, and invite participation. But once we have a listener’s attention – whether a legislator, reporter, grantmaker, donor, or professional partner – with what would rightly be termed “anecdotal evidence,” we also have to know what the data says. In spite of the pithy statement attributed to Albert Einstein that “Not everything that can be counted counts, and not everything that counts can be counted,” in this era of empirical verification and accountability, numbers are essential. AND we have to make sure that we pay attention to the measures that really matter when it comes to families’ experiences.

Within the last week or so, three new reports have been released that offer new data – and some stories – relating to (1) children’s overall health and wellbeing in our state, (2) consumer perspectives on how the Healthy People 2020 goals relate to children and youth with special health care needs, and (3) the number of families of children with special needs and Family Voices’ impact as the federally funded Family-to-Family Health Information Center for Colorado.

Links to view the reports themselves:

• KIDS COUNT in Colorado
• Children and Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective
• Family Voices Colorado Data Brief 03-20-2013

Some significant findings

KIDS COUNT 2013:

Economic Security

• In 2011, children were the age group most likely to be living in poverty in Colorado. Colorado children were 1.4 times as likely to live in poverty as adults between the ages of 18 to 64 and 2.6 times more likely to live in poverty than Colorado seniors.
• More than one in six Colorado kids lives in poverty (approximately 217,000 children), according to the most recent estimates.
• The number of children living in extreme poverty (family of four with income below $11,500) has increased 160% since 2000; the number of children living in families above 200% FPL has decreased from 68% to 60%.

Health – starts p. 26 of the .pdf

• Throughout most of the 2000s, Colorado’s rate of uninsured children was consistently above the national average. Between 2005 and 2010, however, the number of uninsured children in Colorado declined by 31%, according to the Current Population Survey. In 2010, only 9% of Colorado kids (approximately 113,000 children) under 18 were uninsured. With positive momentum behind us, the finish line to covering all Colorado kids is within reach.
• While Colorado has made great strides in getting more children covered, children in poverty and in low-income families remain much more likely to be uninsured than their peers in economically stable families. Colorado has historically ranked poorly when it comes to insuring children in poverty, but we have seen steady improvement during recent years. In 2010, Colorado ranked 42nd in the nation, with 19% of all children in poverty uninsured (approximately 43,000 kids). Among children in low-income families (between 100 and 200% of the federal poverty level), 18% were uninsured in Colorado in 2010.
• Medicaid and the Child Health Plan Plus (CHP+) are important factors in the race to the finish line of covering all Colorado kids. As public health insurance programs administered by the Colorado Department of Health Care Policy and Financing and funded jointly by the federal and state government, Medicaid and CHP+ help kids get the preventive care they need to stay healthy and ensure they can see a doctor when they are sick or injured. Medicaid covers children in families with incomes up to 133% of the federal poverty level (approximately $30,600 for a family of four in 2012), and CHP+ covers children in families with incomes that are too high to qualify for Medicaid but are below 250% of the federal poverty level (about $57,600 for a family of four in 2012).
• During times when our economy struggles, enrollment in Medicaid and CHP+ typically grows as unemployment rises and many parents lose their income and benefits. The latest recession was no different. In FY 2011-12, 30 percent of all Colorado kids ages birth to 18 (about 393,000 children) were enrolled in Medicaid at some point during the year, a 28% increase since FY 2007-08.
• During the same time period, enrollment in CHP+ grew by 64%, with 10% of all Colorado kids ages birth to 18 enrolled in FY 2011-12 (approximately 133,000 children). In addition to the effects of the recession, eligibility for CHP+ was expanded as a result of House Bill 09-1293, the Hospital Provider Fee bill. Many policies were put in place to improve administration and remove barriers to enrollment, which also contributed to the large increase in enrollment.

Children and Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective

The Genetic Alliance has a helpful overview of the background and goals of this report

The Basics: Who are CYSHCN?

Children and youth with special healthcare needs are defined as “those who have or are at risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”

How many are there?

• Approximately 10.2 million children in the U.S. – 15 percent of all people under the age of 18 – have special healthcare needs.
• More than a fifth of U.S. households with children have at least one child with special needs.

What are the Core National Performance Measures for CYSHCN?

1. Families of children with special healthcare needs partner in decision-making at all levels.
2. Children with special healthcare needs receive coordinated, comprehensive care through a medical home. (A medical home is not a location; it is an approach to care centered on partnership between family and providers of all services.)
3. Families of children with special healthcare needs have adequate health insurance and financing to pay for needed services.
4. Children receive early and continuous screening for special healthcare needs.
5. Community-based services are organized for easy use by families.
6. Youth with special healthcare needs receive the services necessary to transition to adult healthcare, work, and independence.

Family Voices Colorado Data Brief 03-20-2013

• In Colorado, there are approximately 167,524 children and youth with special health care needs age 0-17.
• Family Voices Colorado reached approximately 10,400 of these families, and nearly 3,600 professionals from June 2011 to May 2012.
• Among families of CYSHCN who have insurance, 44.8% report that their current insurance is inadequate.
• 29.2% of families report that their child’s condition causes financial problems for the family (46.1% of families without adequate insurance).
• 25.9% of families report that their child’s condition has led to family members cutting back or stopping work to care for their child (37.5% of families without adequate insurance).

Among families served by Family Voices Colorado who completed a follow-up survey,

• 98.5% report being better able to partner in health care decision-making as a result of that assistance;
• 98.6% report being better able to find and/or learn about community services; and
• 95.5% report more confidence in getting health care and services needed by their child.

Your story matters

In short, the need is tremendous, and we are doing all that we can to make sure that families of young people with special needs are not alone as they face the challenges of securing the health care and related services that their children need. If your life includes a child with special health care needs, please feel free to call us for help navigating these systems and services: 303-733-3000 or 800-881-8272.

And if you have been helped by some part of our work at Family Voices Colorado, we invite you to consider sharing your story or giving back in whatever way you are able.

Seeking Submissions from Mothers of Children with Special Needs for Anthology

Most of what is written about mothers who are the primary caregivers of children with special needs is written by “outsiders.” The dominant view of deficit or burden is an unrealistic depiction that emerges from the medical, educational, or social service community, who serve or service children with special needs. Accepting the paradigm that mothers of special needs children are challenged and marginalized leaves little room for any other understanding that the actual lived experience of the mothers is—as it is with all human beings—a much more complex socio-cultural process than it appears. We want people to see, experience, and feel how mothers of children with special needs live with challenges that are, yes, lived painfully and differently than what most people outside of our world understand, but also generously, fully, and joyfully.

We believe in the power of story. Story transforms. Our hope is that your stories will illustrate a realistic tableau of the lives of mothers of children with special needs.

Mothers of children with special needs, please consider submitting:

memoir essay OR
poetry OR
graphic or illustrated essay OR
narrative photo essay

Submissions must address one of the themes listed below:

Challenges: Sometimes it sucks.
Purpose: I learned my own power; I get “it.”
Providence: Why was I chosen?
Pure Joy: Their joy is my joy!
Joy?: It’s the simple things.

Guidelines

• Multiple submissions are allowed.
• Please do not submit work that has been previously published or that you are
• simultaneously submitting.
• Please submit essays 6,000 words or less and no more than 6 poems.
• Please format your work in Times New Roman, 12-pt, double-spaced font.
• Include your name, email address, phone number on the first page of your document.
• All illustrations or graphics must be in black and white.
• Work should be submitted as a .doc, .docx, or .rtf file.
• Photos should be submitted as a .jpg, .tif, or .gif file.
• Save your files with your last name_title.

Email submissions to lizwhiteacre@gmail.com. Submissions must be received by Monday, April 22, 2013.

You will receive a confirmation email that your submission has been received and can anticipate a response in regards to acceptance in 6-8 weeks.

Each contributing writer will receive one copy of the final and published book. There will be
no other monetary compensation. A publisher has not yet been selected, so we are unsure of a
timeline for publication.

This anthology is the vision of mothers, writers, disability advocates, professors, and editors
Darolyn “Lyn” Jones and Liz Whiteacre.

About the Editors

Lyn Jones has facilitated the Indianapolis Special Needs Mom’s Writing Group for seven years now, asking mothers to gather and write about the challenges and joys of being a mother to a child with a disability. As well, she has focused her ethnographic and narrative research at Ball State University on mothers and individuals with disabilities.

Liz Whiteacre teaches creative writing at Ball State University and has been an editor for literary magazines and the University of Indianapolis Press. She was awarded an Inglis House Poetry Award in 2010 and was nominated for a Push Cart Prize in 2011. Her poetry has appeared in Wordgathering, Disability Studies Quarterly, Disabled World, and other literary magazines. Her chapbook, Hit the Ground, is forthcoming from Finishing Line Press.

Tom Rose, far left, thanks Family Voices staff at Hearts on Fire 2013.

On behalf of the staff of Family Voices Colorado, thank you to everyone who attended, donated to, or otherwise supported Hearts on Fire this past weekend. We are still tallying the donations, but we had a wonderful time dancing the night away, and we couldn’t have done it without all of you who wear your heart on your sleeve on a daily basis.

As we look to the future, we want to be sure we are making the best use possible of the resources available to us, and so we would like your input on the kinds of events we offer and how to have the greatest impact. Whether you attended Hearts on Fire 2013 or not, would you take our survey? It should take less than 5 minutes to complete; just click on the link below.

Thank you for sharing your thoughts. At Family Voices Colorado, we deeply value the voices of families, self-advocates, health care providers and other professionals as together we work to make Colorado a better place for children and youth with special health care needs.