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Why Should You Get Involved?

The goal of early childhood advocacy is to improve the lives of children and families by influencing legislators’ and policymakers’ opinions and activities.  To carry out their responsibilities, public officials require and welcome the advice that well-informed people (like you) provide.

Right now, parents advocates of children with disabilities and our allies currently have a unique opportunity to speak up for the rights of our children in Washington, DC.  To learn more about the proposed changes to Early Stages that is likely to have a negative impact to access to FAPE, read the post entitled “Early Stages and Early Childhood Education in DC”.

IMPORTANT UPDATE: SEE THE LETTER TO CHANCELLOR OF DC PUBLIC SCHOOLS ANTWAN WILSON FROM DC COUNCIL MEMBER DAVID GROSSO, CHAIR OF THE COMMITTEE ON EDUCATION

Sign the Thank You Letter to Councilmember David Grosso.

Here are ways to help build this campaign:

Visit the Advocacy page for more tips on how to help build 

  • Blog with us, share your story
  • Write a letter, email and call to your Council Member
  • Invite your Council Member to visit your school and learn about the Early Childhood Education program there
  • Provide your Council Member with information or educational material on disabilities in early childhood
  • Build an effective media campaign
  • Testify and/or attend a Council Hearing for the Committee on Education

Become a member the Inclusive Prosperity Coalition, please visit email motheringhands@mail.com, or sign up here.

cropped-child-paint-hands.jpeg

Part two – Creating Culture: Choosing to Be An Emotionally Present Parent

Click Here to read Part One

Stressed Parent.jpgAdmittedly, the past few years since becoming a parent have been very stressful. From not knowing why both my children did not meet key developmental milestones (and the initial helplessness and hopelessness that came with that) to not know how to help them.  Because I trust in the guidance of my chi, my question never rests at “Why me?” and quickly moves to “Who else is going through this?” And to my surprise, there are so many families struggling in isolation in what can be a daunting journey to coming to terms with a child’s developmental disability.

In Igbo culture, if a child looks “typically developing” then the only problem with him/her is likely being possessed by an evil spirit, or obanje, that must be prayed on or “disciplined” away. Because children are to be seen and not heard; the grunts, seemingly uncontrollable hyperactivity or temper tantrums are inexcusable offenses that must be corrected by not sparing the rod, so to speak.  It’s difficult to convince people that are deeply rooted in a specific understanding around childhood behaviors that what’s happening with your child requires medical attention.

System of Care
System of Care

And in this uphill battle to convince the “village”, there are other dysfunctions in the system of care. In my experience, the difference between the Nurse Practitioner (NP) that identified my first son and the Medical Doctor (MD) that wrote my second son’s referral was engagement and support. The NP went above and beyond to make sure that I was supported in my process; and even as I switched to a pediatrician as our primary care provider due to the false thought that this would offer more “professional” support for long term health care needs, she talked me through the pros and cons. I am eternally grateful to the NP that helped identify a provider agency that assigned a caseworker that stayed with my family until my son’s 3rd birthday, when suddenly it all went away.  There is so much to say on that transition from Part C to Part B of the IDEA and the role of the medical community to make sure that there aren’t lapse in services, no matter what’s happening within the education system, and I will take time to say it and organize even better than that. But for now, I’ll just say that  look forward to more opportunities to engage the medical community and help them understand the difference in care it makes to have an emotionally present healthcare professional.

I have also come to discover that a lack of appropriate support has been detrimental to my own health and well being; and that these high levels of stress have a damaging impact on my children. So, while pressure makes diamonds, apparently it is not so great for brain development. With so many children being born with a variety of sensory processing, impulse/emotional regulation and communication disorders, conditions typically associated with Autism, or other conditions like ADHD that impact the 9 functions of the prefrontal cortex , it appears that, as  a whole, the healthcare community in Washington, DC that work in direct service to our children tend to not take seriously the need for early and substantial intervention.

Gabor Mate mem
Dr. Gabor Mate, M.D.

One of my favorite authors and public intellectuals, Gabor Mate, says that what helps children the most through these developmental challenges is emotional closeness with non-stressed, emotionally available adults.  The absence of these sorts of people in a child’s a life contributes to why the child is not connecting the necessary brain circuit development that promote positive social relationships and good health. To this end, environment (i.e. school, home, recreational program) is a crucial component to positive brain development, starting in pregnancy and then through the first few years of early childhood  development.

According to “Excessive Stress Disrupts the Architecture of the Developing Brain,”, a position paper published by the National Scientific Council on the Developing Child from Harvard University’s Center on the Developing Child, it identifies three types of stress:

  • Positive stress: is triggered by meeting new people, dealing with frustration, entering a new environment.
  • Tolerable stress: responses that have the potential to negatively affect the architecture in the developing brain, such as conditions like death or serious illness of a loved one, a frightening accident, parental separation, persistent discrimination or other serious life events.
  • Toxic stress:  the strong, frequent, or prolonged activation of the body’s stress management system, causing chronic, uncontrollable, and/or experienced without access to support from someone caring.  This can have adverse effects on the brain architecture and can be caused by chronic abuse, directly and indirectly experienced by the child.

The impact of stress on the parenting environment, resulting in limited support for the parents, starts with pregnant women.  Epigentics shows that genes are turned on and off based on environmental factors, thus genetic arguments do not explain the rising rates of children with a variety of Autism spectrum disorders and other developmental disabilities.  The Harvard study also shows that significant maternal stress during pregnancy and poor maternal care during infancy, which have little to do with genetic composition, both affect the developing stress systems in young animals and alter genes that are involved in brain development.  The conclusion of this study notes that relationships children have with their caregivers play critical roles in regulating stress hormone production during early years of life.  The study notes, specifically, that children who grow up in conditions of economic hardship often exhibit elevated stress hormone levels.

The significance of Georgetown’s CoP is that we address the the cultural dimensions that inform this form of isolation that are faced by many oppressed people, including individuals with disabilities and the families who care for them.  Together as a community of those in dedicated service to our families, and in community with many other cities throughout the United States, we are taking on the positive stress to transform systems to eliminate the toxic stresses that are literally altering the architecture of brain development in our children. Being a part of Georgetown’s CoP and through other efforts with our Coalition and through the network of parent-supported organizations, these offer positive outlets to explore ways to support my family and in support of other families struggling to find a balance and reduce stress for the benefit of our children.

And, because I didn’t grow up with a cultural awareness that readily prepares me to prioritize managing my stress levels in order to show up as a better, emotionally present parent for my children, I choose to adopt a new culture.

 

In solidarity,

Chioma

Part One – Creating Culture: Choosing to Be An Emotionally Present Parent

what is cultureLast week, I had the pleasure of participating in the 2017 Transformational Leadership Forum hosted by the Georgetown University National Center for Cultural Competency (NCCC). I was not only honored to have had the opportunity to learn from highly skilled cultural competency trainers, but the icing on the cake has been to now be invited to participate in DC team’s Community of Practice on Cultural and Linguistic Competence in Developmental Disabilities (CoP), led by partners in the DC Department on Disability Services and involves other collaborators within DC government and in non-governmental agencies.  There was so much useful content presented in this two-day forum and I left in deep reflection about what aspects of my culture inform my parenting style as well as my approach to disabilities advocacy. 

CoP

Taos Drum
Drums are considered the  heart beat of mother earth and used in ceremonies and celebrations in many Native American cultures

The forum began with us sharing our culture. And without setting any parameters as to what constitutes “culture”, it offered us an opportunity to share a vast array of things that we identified as self-representative. I chose to present a Taos hand drum, gifted to me during my two-year sojourn to Santa Fe, New Mexico. While I am proudly West African (Igbo, to be specific), I have always felt a connection to indigenous cultures in the Americas and have been fascinated by the similarities in values and ceremonies with indigenous Africans. One shared value that I cherish  is the importance of birthing and naming ceremonies, of which drumming is a big part of these forms of celebration. In the case of Igbo culture, naming a child is of the most important actions taken in early life. One earns their names eight (8) days after birth, and there are many participating elders that help new parents with this aspect of tradition through prayer, libations and, of course, music.   

African Talking Drum
The talking drum is used for communication and is used by many West African cultures to send important messages 

The Igbo believe that each person is born with a chi, or god-self, and to honor this chi, the child is studied by an elder while in the womb. At birth, the names are revealed with the first name embodying the essence of his or her chi, which is lifelong guardian angel-like energy.  While there are variations of the naming ceremony within in Igbo culture and acorss different African ethnic groups, in my case I was named Chioma (which means “fortunate”) by my grandfather. By the traditions offered by the ancient Igbo, my chi having oma or goodness, would suggest that my life’s path is paved with chance encounters and opportunities that are commonly associated with “luck”. And truly, I have been lucky in ways that have surprised me. With  every misfortune faced, I have been witness to the many blessings that seem to come at the strangest, most needed times. This sort of chance luck is what took me to New Mexico in the first place (a story for another day) and continues on even now, as I work with other families and concerned community members to build the Inclusive Prosperity Coalition.

While it’s not been an easy year in efforts to build our Coalition and win active participation from our families, whose hands are already so full with organizing care and support for our children. Nonetheless, we have bore witness to two great victories in terms of improving DC Child Find the short time of our existence: 1) the ruling in the D.L. v. District of Columbia case, championed by a great and capable legal team of Terris, Pravlik & Millian, LLP that are affiliated with our coalition; and 2) The Committee on Education of DC City Council, chaired by Councilmember David Grosso, who recently released a letter to Chancellor of DC Public Schools Antwan Wilson inquiring around the potential detrimental changes that Early Stages, a key agency responsible for identifying children with developmental disabilities and delays in the District of Columbia.

Besides the belief that we as a Coalition will be victorious, given what I already know about my chi, I am also greatly motivated by the love of the children. With consideration that my primary responsibility is to my own children, I am also in reflection on how to reduce my stress levels so I can better provide the emotional support in these early and formative years of life. Culturally speaking, my family and the many other Igbo families I grew up with, operate with the philosophy that children should be seen and not heard.  The age-grade system that we practice tends to limit access and power in the family and community based on age.

Having non-typically developing children with delayed speech development, sensory processing issues that result in mal-adaptive behaviors, I am constantly judged as a parent for not controlling my children.  And while I’m strong enough in character and grounded enough in another revered cultural value of nneka, (which means “mother is supreme”), I use all leverage as holding the revered title of mother, or nne, to shut down these sorts of attacks. However, I am less successful in creating a support system of emotionally available caretakers for my children in the times I have to be out of the home at work and in the community supporting other families.  It’s a hard balance to achieve and isolation is a real threat to achieving quality of life for many children with disabilities and their families, mine is no exception.

Part two of this blog post will look at the research I’ve discovered that supports the need for greater attention to getting the tools to reduce stress as a parent and to develop a support system of other non-stressed and emotionally present caretakers.


Caretaker in Maleness: The Economy of Male Teachers and Healthcare Professionals

MCASLast week, I was invited to speak with the Male Caregivers  Advocacy Support Group, an initiative of Health Services for Children with Special Needs (HSCSN).  It was truly an honor and pleasure to be surrounded with black men that are committed to being strong support for their loved ones with disabilities.  It brought tears to my eyes because, personally, I struggle with providing male support for my boys. And while I harbor some guilt due to the breakdown of my union with their father and, at the same time, am frustrated with the fact that he lives out-of-state; I am solution-oriented and determined to find other ways to accommodate for the many signs that having healthy male presence is in the best interest of their growth and development.  So, once I got to call from HSCSN to address an audience of male caregivers, I enthusiastically accepted the invitation.

This invitation also came shortly after I read a recent article in USA TODAY entitled, “Male teacher shortage affects boys who need role models”. The piece notes that, “A male role model figure is a key person in many of…boys’ lives, especially if this person is someone who listens, who’s a giving person and patient…[a]nd there may be boys who might be afraid to ask questions to a female figure or may be more comfortable with specific questions geared for men.” While as a mother, I work very hard to be present for my sons – especially because they have developmental disabilities – it is not easy holding masculine and feminine positions in their home lives. So, in reading this I felt both gratitude and guilt that a such deeply private and personal subject matter has surfaced to peak the interests of popular dialogue. Yet, if I am to be honest of my observations of my own sons and how differently they act when encountered with men versus women, my guilt is tempered by my gratitude that these inner thoughts are being aired out so I can more thoroughly confront and unpack the emotional layers of this truth. I can’t speak for everyone’s child(ren) about the impact of an interaction with an energetic and engaged man but from my observations of my sons, encounters of this nature are undeniably powerful and positive.

Male Teachers
Image taken from the USA TODAY article that notes that, “According to the Consortium for Policy Research in Education, only about 24 percent of all teachers in 2012 were male, with just one in 10 men teaching elementary school students.”

The guilt I feel mostly comes from having a failed union and also not being very successful at co-parenting. There is also another layer of this guilt caused by societal pressures felt from the fascination in popular media of the marital status of African American women – to the point where our procreation and singleness is always being monitored by laymen and social scientists alike. Mind you, I am also sort of gender-bender and don’t promote identification with any one gender – especially as such definitions are defined within the context of Eurocentric patriarchy.  Furthermore, as a social scientist in my own right, the concepts of “maleness” and “femaleness” have fascinated me so deeply that I dedicated my dissertation research to investigating how cultural values from precolonial African matriarchal systems offer possible solutions to the devastated political economy in war-torn regions such as the town of Goma, known as “the rape capital of the world”, located in the eastern region of the Democratic Republic of Congo. Yet despite my personal position on gender, or even my aspirations to restore matri-focal values to guide a redistribution of wealth and restore of economically devastated communities through gender equity, at the heart of it all, I am a single mother raising two boys with mal-adaptive behaviors that seem to flare up more in the presence of women than they do with men caregivers. This is a fact I cannot deny and must estimate fairly when I think of what’s in the best interest of my children’s development.

The USA TODAY article also references a federally funded initiative at the University of Notre Dame called TRiO, whose director, Ethan Zagore, attributes the shortage of male teachers to both conscious and subconscious gender bias of the role of an elementary school teacher as better suited for women.  Similarly, the health care related professions, such as nursing, are also noted as a female-dominated field. And for many medically fragile children with disabilities, healthcare professionals are as prominent in their lives as educators.  So, if education and healthcare professions are female dominated, what impact does this have on delivery of care?

Additionally, in 2016, the US Census attributed 23% of all family arrangement as children living with single mothers,  while another study by the Kids Count Data Center finds that since 2011 the rate of single black or African American families is 66% to 67%. Additionally, a 2014 Washington Post article notes that, “half of all children will live with a single mother at some point before the age of 18,” and that a black child is more like to be born to a single mom, or a mom without a college degree, than a white child. So, doing the math and being honest in my subjective observations of my sons, I am cautious to not be zealous in a support for male teachers and caretakers because that articulation can easily be skewed and lead to more workplace oppression for women workers. Yet, it is important to not overlook my personal observations as a truth about my sons and begin investigating the benefits of recruiting and sustaining male caregiver and educator roles for all children, with special consideration to its influence on complex layers of care for children with disabilities.

Gender Pay Gap.pngIn fairness, I am still unpacking the layers of taking such a position on this issue. In so doing, it is has been important for me to consider that if there is to be an increase in the recruitment of male teachers and caregivers, what impact would this have on an already skewed and gender imbalanced labor force? Women on average earn less than men in every single occupation for which there is sufficient earning data for both men and women to calculate an earning ratio.  Not to mention, recent studies show the median wealth for single women of color to be only $5. And while in my case, raising two boys with Autism, my experience with my sons show that male caregivers positively impact their behaviors, this is not the whole story on the layers of gender oppression even in terms of accounting for children with disabilities.

Autism Studies and GenderA recent article in The George Washington University Magazine offers insight in the fact that despite studies show that boys are more likely to receive such a diagnosis than girls, there should also be cause for concern on the gender bias against the textbook definition of Autism (i.e. receptive behaviors, impaired communication and social interactions) are skewed measures that only identify how this spectrum developmental disorder might show up in girls. Keeping all these in mind, I temper my sentiment on if labor and other economic factors should bend towards increasing its recruitment efforts to attract and retain male teachers, for example, as the USA TODAY article notes. My subjective desire to offer more men for my children to be influenced in school and healthcare settings is not articulated in ignorance of real oppressions faced by women and girls, even in the realm of Child Find, where girls are identified as having a developmental disability or delay at lesser rates than boys because it shows up so drastically differently.

While still internally interrogating these layers to inform my support of initiatives to increase the role of male professionals in the field of education and healthcare for children, I am still very proud and honored to have spent some time last week with the HSCSN male caregivers group. I also feel that I, as a single mother, was a good candidate to address this group of men within the context of advocating for the rights of children with disabilities. It is important for me to articulate here, as it was to address this with the male caregivers, that women in my position as head of households are not the problem in education or healthcare for black children, as respectability politics might suggest when assessing the problem with the contemporary black family.  Yet, in truth, I cannot raise my children alone, and I have no intention to do so, but even in my acceptance of needing others to join in helping to expose my children to positive men and women role models and caretakers, I wholly acknowledge that the heavyweight of childcare cost and management rests with the mothers. And that this reality requires more gender-balanced analyses of the economic, medical, social, emotional and academic impact of children of all abilities, with respect that even in childhood there are layers to gender based oppression and marginalization.

 

In solidarity,

 

Chioma

 

Nurtured in Politics: Growing Up in Washington, DC

welcome-to-washington-dcUnless one is living under a rock, or is a millennial that didn’t grow in Washington, DC, most are aware and saddened by the passing of longtime news anchor Jim Vance. Reflecting on how much he and co-anchor Doreen Genzler were furniture in memories of my youth in DC also here prompted more bittersweet thoughts about this great city.

Since becoming a mother, I am increasingly more prideful about being a Washingtonian. Given the many challenges I’ve faced in efforts to gain access to a better quality care for my children at school, in the community and at home, this statement would seem contradictory. Also, given the chaotic political climate in the Federal government with the majority Senate vote today on a key motion to open discussion on moving forward with repealing the Affordable Care Act and other critical issues that’s all happening right here in DC.  Due to this, I receive many calls of concern from family, friends and loved ones living outside of this area wondering how I cope with being in such an intense and critical time.  Despite all of these factors, my DC pride has kicked up and here’s why.

ChocolateCity

Beneath the surface of all the real stress and tension in DC right now is an extraordinary history that’s at once both local and global – a history well captured by great journalists such as Jim Vance. The people of DC, those that I’ve come to know and love as native Washingtonians, with roots in this city going back generations, there is a unique pride and articulation of black identity that’s very familiar and communal like a small town; and at the same time, flavored with big city ambition and sophistication.  And as an immigrant African growing up here, I’ve had the vantage point of being both an insider and outsider to the “real DC” culture.

Birthing and raising children here, joining the ranks as a multi-generational Washingtonian, has also allowed for a new perspective on my local identity.  I think, politically, another factor contributing to my increased DC pride also comes as a response, a resistance to the changing landscape of the city largely due to urban renewal, otherwise known as gentrification.  In the past twenty (20) years, I have watched family and friends move out of DC, with the majority moving just next door to either Maryland or Virginia. At the same time, I read of lot of articles – one of which was on the widening wealth gap in the city that was recently reported by the Washington Post, citing an Urban Institute study called the “Color of Wealth in the Nation’s Capital”. The study found that between 2013 and 2014, white households in the DC area had a net worth (value of assets minus debt) of $284,000 while black households had a net worth of $3,500, the report said – in other words, the average white household has a net worth 81 times that of the average black household in Washington, DC. Hispanics had a net worth of $13,000, East Asian Indians a net worth of $573,000, Koreans at $496,000 and Chinese at $220,000.  The study doesn’t mention or distinguish the immigrant black populations from the traditional African American demographic.

Wealth Gap DC

An Urban Institute study also notes that the black population in DC stands at 48%, down since the 2007 recession from 70% in the 1970s.  The study also finds that black unemployment in DC is higher than the national average, despite the high rate of employment in the public sector in DC.  Most critically, the report cites that, “the typical black household in DC has only $2,100 in liquid assets – resources they can quickly convert into cash when faced with an emergency. Whites, in contrast, have $65,000 in liquid assets.” Another article in The Atlantic notes that more than any other racial group in DC, blacks have a much higher unemployment rate, lower education rates and more likely to receive a subprime loan. Ironically, black people in Washington, DC are economically doing better than most blacks in other cities in the United States, ranking as the 3rd most economically beneficial cities for African Americans in 2015 by Forbes.

“…the typical black household in DC has only $2,100 in liquid assets – resources they can quickly convert into cash when faced with an emergency. Whites, in contract, have $65,000 in liquid assets.”

The reality of a widening wealth gap and displacement has a negative impact on access to a quality of life for individuals with disabilities; and for parents raising children with disabilities, the economic reality in the US is dismal.  Here are some quick facts:

  • The Children’s Defense Fund finds that 16% of low-income families (families earning less than 200% of poverty) have a child with a disability; 9% have a child with a severe disability. This is nearly 50% higher than the rate among higher-income families. The percentage is particularly high among welfare families -20% of these families have a child with a disability, including 13% where a child has a severe disability.

 

  • According to the 2000 US Census, among families with one or more members with a disability, the poverty rate was 12.8% – higher than the 9.2% for all families and 7.7% for families without members with a disability.

 

  • The same 2000 US Census noted that families with a female household (totaling 12.5 million families) with no husband present were more likely than other types of families to report having members with a disability. 34.8% of these families reported one or more member with a disability, compared with 27.3% among the 55.5 million married-couple families and 31.6% among the 4.3 million families with a male household with no wife present. Divorce following the birth of a child with a severe disability has been cited as the primary factor leading to a single-mother headed household for families with children with disabilities.

 

Disabilities HousingA recent report called “A Broken Foundation:  Affordable Housing Crisis Threatens DC’s Lowest-Income Residents” by Claire Zippel of the DC Fiscal Policy Institute notes, “A typical extremely low-income renter in need of affordable housing is a working mother raising two children, a person with a disability relying on a fixed income, or a childless adult in a low-wage job.” Imagine the intersection between both a working mother raising children with disabilities or a childless adult that has a disability. The economic outcome is dismal and this perverse real life remake of Darwin’s Survival of the Fittest is unbelievable and unacceptable. It is only through city leadership that understands the layers of these problems and has the commitment to resolve these issues will we see real solutions to these sorts of problems. But as it stands, while I love DC, it doesn’t seem to love me or anyone that fits into my kind of vulnerability or even much a worse economic position.

I keep reading reports of that new arrivals to DC are  now leaving because of how expensive the city is, and while this is important to learn, these reports don’t reflect what would be the original sin of this crime.  Looking at the many families of children with disabilities that ascended this week to observe the Senate vote against our interests, because DC is not a state and we are bearing our own cross in this fight, it is impossible to be a formidable ally to others around the country that could benefit from our proximity. If we weren’t riddled with the extraordinary economic stress in raising our children here in DC, with constant fear of losing benefits should we be forced to relocate, we might be more able to join forces and better play our position as DC residents.  And at a point, we were strong allies for many liberation efforts, from the March on Washington to the Anti-apartheid movement, DC has been a hub for black civil and human rights, with Howard University playing a critical role the black studies movement – a higher education movement for education reform calling on universities to academically invest in research areas.

To know DC, the real DC, is to love it. And to know it, one would have to see  DC the way I’ve seen it transform to really feel the pain in my heart when observing what is happening and the distance from the history behind it. And while I remain deeply committed to improving the educational outcomes for children with disabilities in DC public and public charter schools, I can’t help but wonder if I’m cleaning up my home so its more livable or if I’m working as its maid or nanny – only working to benefit a demographic that won’t include me because I too cannot afford to live in this city I love much longer.

 

In solidarity,

Chioma

ESSA and Special Education: the Spectrum of Hopes and Fears of a Parent Advocate

 ESSAsliderimage_525x264v3.pngWe are only half-way through 2017 and already, this year has proven to be groundbreaking in regards to Local and Federal policies regarding delivery of care education services for students with disabilities.  From the landmarks Supreme Court ruling in the March 2017 Endrews F. v Douglass County School District, which ruled in favor of academically challenging individual education plans (IEP) in the least restrictive environment (LRE) as mandated by the Individuals with Disabilities Act (IDEA) revised in 2004, to the June 2017 District Court of Appeals ruling in the D.L. v District of Columbia that upholds a 2011 ruling in favor of the plaintiff and holding the District of Columbia responsible for meeting detailed guidelines to improve upon the Child Find policies for children between the vulnerable ages of 2 years 8 months and 5 years 10 months transitioning into Pre-Kindergarten. And as I write this, today is the first of a three-day Leadership Conference by the US Department of Education’s Office of Special Education in Arlington, VA, where Secretary of Education Betsy DeVos and other notable speakers and presenters will speak in depth on the future of special education with consideration to the changing Federal and State education guidelines. Indeed, these are critical times.

As a resident of the District of Columbia, of which we hold no voting representation in Congress due to not being a recognized state in the Union, our system of organization to carry out education policies is unique and, at times, dysfunctional.  And when it comes to special education, or general issues impacting the rights of individuals with disabilities, the District as a whole and our education system holds deep-rooted cultural biases that inform, and thus limit, progressive policies and practices that could more positively and comprehensively improve the quality of life for those directly impacted of all ages and their families. Beyond being a city-state tasked to carryout mandates that the other 50 autonomous and represented state structures are equally (not equitably) tasked with, we also experiencing growing pains that challenge the systemic intelligence around how our local government manages and integrates care for individuals with disabilities of all ages, with children and youth being the age groups most impacted specifically by educational policies.  The combination of a less-than-desirable state system motivated by forces beyond our control (i.e. no taxation without representation) and a difficult learning curve that requires political will of gigantic proportions to change these deep-rooted cultural biases that inform policies, this combination produces both opportunity and despondency in a parent advocate such as myself.

SPED

The Every Student Succeeds Act (ESSA), which is the Obama administration’s articulation of the Elementary and Secondary Education Act (ESCA), was signed into law on December 10, 2015 and in many ways improves on the Bush administration’s No Child Left Behind Act (NCLB) of 2002.  In a speech delivered at the 2011 annual meeting for the American Association for People with Disabilities, former Secretary of Education Arne Duncan credited the NCLB for its groundbreaking policy, making it impossible for “Americans [to] no longer ignore insidious achievement gaps [for students with disabilities].”[1] With the school year 2017-18 being the first school year that ESSA takes full effect, it is too early to evaluate any of the  areas of improvements to the NCLB, which most notably includes more autonomy for states (and the District of Columbia) in determining how this law is implemented, monitored and measured.  Yet, there are articulations within ESSA that show promising signs that is aligned to champion the rights of children with disabilities while at the same time not being heavy-handed in imposing on states how to achieve greater performance outcomes.

As a parent of two young children with autism, with my youngest still in Pre-Kindergarten, I am encouraged by what I understand to be areas of progressive change to the Federal education policy guidelines in ESSA.  For one, ESSA now requires states to involve the public and representatives of a wide range of the education community as state officials put together accountability plans due of either April 1, 2017 or September 18, 2017.  For the April 1st deadline, fifteen states and the District of Columbia submitted the plans to their governors (or in the District’s case, to Mayor Muriel Bowser) – who in turn submits it to the US Department of Education. Another critical aspect of ESSA is the establishment of “comprehensive center on students at risk of not attaining full literacy skills due to a disability,”[2] which includes a wide variety of disabilities.

Indivualized Education Plan (IEP) alphabet blocksWhile ESSA seeks to transform some of the restrictive policies that limited state’s rights to self-determine their education policies, the IDEA is still the leading legislation that guides in regards to protecting the educational rights of children with disabilities. Similar to the NCLB, ESSA will continue to honor a system that requires states to submit separate performance reports on state tests for students with disabilities, which must still be administered in grades 3-8 and once again in high school.[3] ESSA is also said to place a 1% cap (which equates to 10% of students with disabilities) on the percentage of all students who can take alternate assessments in order to accommodate for students with severe cognitive developmental delays or disabilities.[4] As noted earlier, the verdict is still out on what this all will mean for education outcomes but as a parent advocate for children with disabilities (including but not limited to my own), I am hopeful that ESSA coupled with the rulings in the Endrews and the D.L. cases will put the necessary pressure on the District’s Office of the State Superintendent (OSSE), which is our state education agency (SEA) given authority to monitory the performance and implementation of the ESSA state policies of the 65 local school agencies (LEA) for the District’s public charter schools plus the District of Columbia Public Schools (DPCS).

And even with all this optimism, I am still weary that we have not overcome some of the unconscious biases that influence discrimination against individuals with disabilities and unless there is also some attention given to overturning this culture of violence and silence for some of our most vulnerable citizens that have suffered such cruel behavior as noted in another landmark case Evans v District of Columbia that led to the closing of institutions such as Forest Haven. As a parent, I am still subject to people’s judgement against my parenting and the perceived maladaptive behaviors of my children with autism. I know firsthand the ugliness of those who would otherwise like nothing more than to see my children disappear or be put away due to different ways they express themselves in the world. I am aware that bullying is very real issue for children with disabilities and that our schools have not offered a program that gives me much comfort that my children will not be a target. I know that the unauthorized use of forceful restraint methods on school premises either by school employees or invited law enforcement officers remains a huge problem, as noted in a recent report led by the University Legal Services of the District of Columbia. And I know that so many other parents share these concerns for legitimate reasons.

Additionally because the District is not a State, the unclearly defined roles of our State Board of Education, Public Charter School Board and even those of the Superintendent Hanseul Kang and the Chancellor of DCPS Antwan Wilson, remain vague and lack transparency, particularly in regards to special education services and the rights of students (and their parent/community advocates) with disabilities. Until these issues are addressed and clarified with more rigor and commitment both Federally and through District policies, my optimism will be remain tempered by my fears.

In solidarity,

 

Chioma


[1] “Preparing Students with Disabilities for Success: Secretary Duncan’s Remarks to the American Association for People with Disabilities,” March 15, 2011, US Department of Education, accessed July 17, 2017, https://www.ed.gov/news/speeches/preparing-students-disabilities-success-secretary-duncans-remarks-american-association-people-disabilities

[2] 20 USC 6674: Technical assistance and national evaluation, from Title 20 – Education, accessed July 17, 2017, http://uscode.house.gov/view.xhtml?req=granuleid:USC-prelim-title20-section6674&num=0&edition=prelim

[3] Christina Samuels, “Special Education Groups Push for ESSA Representation,” Education Week, December 30, 2016, accessted July 17, 2017, http://www.edweek.org/ew/articles/2017/01/04/special-education-groups-dig-in-on-essa.html?r=192922611

[4] “Special Education Groups Push for ESSA Representation”

Minutes from July 12, 2017 IPC Teleconference

Minutes from July 12, 2017 IPC Teleconference

Time: 6:30 pm – 7:30 pm EDT

Host: Chioma Oruh, Parent Advocate for the Inclusive Prosperity Coalition

Attendees:

Mansoor Abdur-Rahman

Angelo Telesford

Hashim Coward

Minutes:

  • Chioma Unable to host meeting and will return next week. Mansoor filled in to moderate for her this week.
  • Chioma is serving as the camp director from July 10-14, for the She the People Politics Camp; a program for young girls of all abilities between the ages of 13-17 years old; the Therapeutic Recreation and Inclusion Division of the Maryland National Capital Parks and Planning Commission in Prince George’s County initiated the program.
  • Angelo will be attending a discussion from 10am – 12pm at the Department of Regulatory and Consumer Affairs (DRCA) on July 13, 2017 titled, All Things Non-Profit- 1100 4th Street, SW, Washington, DC 20024
  • Fund raising committee will provide an update next Wednesday.

Meeting ended at 7:15 pm

 

 

Minutes from July 5, 2017 IPC Teleconference

 

Time: 6:30 pm – 7:30 pm EDT

Host: Chioma Oruh, Parent Advocate for the Inclusive Prosperity Coalition
Here are some quick recaps:

Attendees:

Mansoor

Chioma Oruh

Discussion

  1. Survey will be created and sent to individual members
  2. Create strategic plans for the following:
    • A Group Scheduled OUC Tour
    • Organized Play Dates
    • Regular Trainings for Parents Transitioning from Day Care to Pre-K
    • Back to School Boot Camp
  3. Next meeting I’ll give an update on a meeting I will be having with the Early Childhood Education team at DCPS on ways to involve parents in the Child Find process (more to come!)

Meeting ended: 6:55 pm