Part 1: (IDEA/Child Find)+ Basic Income = Equity

basicincome2This past weekend, I had the opportunity to present at the Sixteenth (16th) Annual North American Basic Income Guarantee Congress at the Silberman School of Social Work at Hunter College. It was such a positive and uplifting event with a variety of people of many political persuasions and representing different industries that all came together to talk strategy on how to make Basic Income a reality in the United State. From Chris Hughes, co-founder of Facebook, to Juliana Bidadanure, professor and director of the Stanford University Basic Income Lab (BIL), to Andrew Stern, former President of SEIU. There were even other folks from DC that I met there and look forward to being connected with! The only people missing from this gathering were parent advocates of children with disabilities. Here’s why I think YOU should have been there:

Forest Haven

One of the catalysts that sparked the creation of the Inclusive Prosperity Coalition is the on-going threat by Early Stages, the DCPS Child Find agency, to no longer directly provide evaluation services for children between 2 years 8 months and 5 years 10 months. This happened in the middle of the persistent class action lawsuit D.L. v. the District of Columbia – the case that motivated the creation of Early Stages in 2009 to resolve previous issues of decentralization and balkanization of the Child Find process in DC. And is also part of some other key legal matters that other disabilities advocates in the District have taken up including another ongoing class action case Oscar Salazar et al v. the District of Columbia that has led to improved and timely access to the Medicaid services for families with children with disabilities in DC. Also, the historic 40+ years Evans v. Washington case that has led to many systemic changes to the treatment of individuals with disabilities, which has motivated a current Bill considered at DC Council and endorsed by many self-advocates and survivors of Forest Haven. This bill speaks to antiquated civil commitment reform practices that limits the self-determination of those with disabilities to participate in their choice of residency that impacts other key life decisions.

basic1

What do all of these cases have in common? These cases can all be summed up to show that low income and middle class families unable to afford private care or, alternatively, private education do not easily receive due respect and full access to human rights considerations that may or may not lead to them to being eligible for government programs to offset these costs that assist a greater quality of life for themselves or loved ones in need of care. With just a bit of more dignity offered when families are in need of assistance, it becomes more possible to have access to medical care and create more opportunities for school choice in the best interest of their vulnerable child/children with disabilities. And these small adjustments made to how business is conducted to give assistance where needed can protect against social catastrophes that have led to many case law, such as the ones listed above, and prevent such tragedies such as the death of young Joy Evans at Forest Haven).

And as I deepen my understanding and respect for the social emotional learning movement, I cannot think of anything more emotionally intelligent than a society that removes food, clothes and shelter from the things we barter on the market when it comes wages and income. Alternatively, I cannot think of anything more inhumane than the gross income gap in Washington, DC where majority of District families spend over 80% of their income just on rent alone. Imagine the financial stress and burden of constant threats to homelessness just to be able to keep a roof over your head. What if we take this off the table for all families and the impact this will have in quality of care for our loved ones with disabilities?

This is a real possibility and I am excited to participate in more processes that make basic income a reality in the United States. And everyday, we are closer – just look at Hawaii that is currently considering taking on a pilot program just as Ontario, Canada recently did. [Read Part 2: What is Basic Income]

In solidarity,

Chioma Oruh

If you are interested in blogging or collaborating in research projects, please email motheringhands@mail.com.

 

Disabilities Competency: Lessons of a Parent Advocate

unconsciousbiasOver the past year, I have been privileged to meet many people operating at various levels of disabilities advocacy in Washington, DC. Ranging from elected officials to accomplished advocates to parents/caretakers to self-advocates, it has been a heartwarming exposure to people who are also passionate around improving our community through personal and political measures to ensure more and equitable access to goods and services to improve the quality of life for individuals with disabilities. I am also honored to have recently been appointed to the National Advisory Committee of Georgetown University’s National Center for Cultural Competency Community of Practice in Developmental Disabilities, which has encouraged me to reflect more on some of my own unconscious biases. I look forward to deepening contacts with other dedicated advocates and self-advocates and in helping to bring in new advocates through our collaborative efforts as part of the Inclusive Prosperity Coalition.

While laser focused on children and youth that with disabilities in DC, there is a bill at DC Council for that impacts the human rights of adults with intellectual and developmental disabilities.  In promoting this issue, I have been encountered with some push back that might suggest that taking a stand on this issue might equate being “off message”. This has also inspired more reflection on my part to be more aware of how privilege works and what it means to be an advocate that is both culturally competent and compassionate while at the same time being strategic and goal oriented. Disclaimer: I don’t have all the answers. The good thing is that none of us do, so I want to again extend invitation to those so inspired to join us in producing content for the Inclusive Prosperity Coalition.

If you are interested in blogging or collaborating in research projects, please email motheringhands@mail.com.

In the meantime, please join me in my processing of disabilities competency!


ATtyandMommyPrior to becoming a parent of children with autism, I rarely spent any time at all contemplating on the lives of those living with disabilities.  In fact, they simply didn’t exist in a real way for me.  Don’t get me wrong, I would see people in wheel chairs, observe those communicating through sign language, see people with their guide-dogs or canes and casually observe someone with a mental disability. My immediate emotional response would be sympathy but just as fleeting as any thought, it would blow like the wind breathing-in and quickly breathing-out, without depth in thought or contemplation of anything that would deeply humanize their experience.  I’ve even participated in workshops and trainings that would cover “ableism” but would intellectualize the concept, as certainly as a black immigrant woman, calculating my privilege is not an exercise that I am used to accounting for. In truth, this able-bodied privilege coupled with the previous sorts of oppression I personally experienced made me a bit arrogant about integrating ideas that would suggest that I benefited anything in American society over anyone.

I make this personal testimony because as I move forward in my advocacy for my own children, I must remain reflective of the times I knew nothing about disabilities rights and compassionate for those who share similar world views as I did prior to being forced to expand my concept of self and those of others in the world.  We are all privileged in some way as well as disadvantaged in other ways, yet striving for equity versus equality makes me more accountable for how I approach situations where I might have an advantage with a similar mind of justice as I would a personal incident of oppression.  This is very challenging to do consistently and even in my awareness, I still struggle to account for many other privileges I might not be aware of until confronted with someone in need of some opportunity available to me that is not universal.

Due to the arduous nature of self-work of maintaining awareness of self and compassion for others, impact on the material reality can be challenging as well. For example, just because I have children with autism and, now, consider myself an advocate for individuals with disabilities it is easy to be singularly concerned with developmental disabilities while turning a blind eye (pun intended) to other forms of disabilities. There just aren’t enough hours in the day to take every issue on or access to enough individual brain power to create solutions to every problem, yet it is critical to respect those others taking up the mantle for a variety of causes and stand in solidarity with them when opportunity presents itself.

Burn outAdditionally, it is easy (at least for me) to adopt a messiah complex that presupposes that no problem will be solved without my contribution. There’s a lot of personal and community damage caused by this approach to advocacy because, on the one hand, one can easily burn out and not create necessary boundaries for self-care that lead to unhealthy lifestyles and imbalanced relationships; and alternatively, studies show that diversity promotes creativity and efficiency in projects that require tangible outcomes.

As a mother, I understand very intimately the instinct and, necessity sometimes, to micromanage, it is an undemocratic way to go about doing things and can cause resentment to those others within a project due to the self-absorbed mentality that somehow nothing good happens without personal input.  And most importantly, for ideas that require directly impacted populations to be involved, it is also a form of oppression to exclude the input and leadership of those that are benefactors of a cause. Again, in motherhood, I have learned the hard way that, even at a very young age, tantrums can be decreased with more “buy-in” and input from my children on a variety of life choices ranging from what clothes and shoes they should wear to what school environment they should be in.

[Side Note: Bill 22-0154 promotes person-centered counseling as a process to help increase self-determination from otherly abled people who might not use words or other popular ways of communicating, in order to get their point across. I am very excited at also having recently participated in a person-centered counseling training offered by the No Wrong Doors Initiative of the DC Department on Disability Services]

And yes, it requires consistent communication, patience and empathy to create a climate of inclusion that is ethical and sincere. Yet, when considering the nature of physical, cognitive and psychiatric disabilities, it is critical to resolve any delusions of grandeur, or messianic intentions, because it can do more harm than good in the long run.

African Parent Meme

Meant for humor. African parents are great!

Growing up in a Nigerian family where there are lots of decisions made based on age and status in the family, we come to consensus in a structured and regulated manner. Due to this, I have to do a lot of personal work to not be an “ageist” when it comes to many decisions. Even as a university lecturer, because I am conscious of my tendency to dismiss the input of those younger than me, I tend to go above and beyond to create a climate where my students feel that my grading them is a collaborative effort. This approach is also true in advocacy. For me, age is not just about the number of years one has lived but also the level of knowledge one has acquired and because I go above and beyond to study, there is a level of arrogance (that is also rooted in privilege) that can come from having mastered some level of information that others either don’t know or are not as articulate to express what they know. In both cases, humility means being able to hold back, step back and allow others to grow at their own pace without feeling like they might be less as human beings just because they have less than perfect mastery over any one particular issue. Again, when considering the spectrum of learning disabilities, it is critical to account for different intelligence when doing public advocacy.

Pedagogy Quote

 

In one of my favorite books, Pedagogy of the Oppressed (1968), Paulo Friere suggests (paraphrasing) that when teaching it is important to keep in mind that people are not empty vessels in which information is poured into, rather we all come to the table with mastery of something. And whatever that “something” is, it is important to acknowledge while introducing new ideas.  Advocacy requires lots of teaching so adopting this mentality has made me a better communicator of ideas and being reflective of my own limitations in knowledge has been my best strategy at remaining humble.

There are many more lessons learned, and surely many more to be learned.  There are many great and free tools on the website of Georgetown’s National Center for Cultural Competency. So, please join me on this journey to be a more inclusive, emotionally intelligent and accountable member of the great network of disability advocates!

 

In solidarity,

 

Chioma Oruh

The Role of Parents in the Movement for Social Emotional Learning (SEL)

Social Emotional LearningThis week, I attended an event at the Brookings Institute on The Future of Children. This event was brought to my attention by one of the members of our Coalition and I am so grateful there was opportunity to not just attend but participate in this very important exchange of ideas.

Truly an amazing insight in behavioral analysis, social emotional learning (SEL) is an evidence-based process that helps our youth get a head start in being conscious participants in creating the best versions of themselves.  In many ways, parents of children with disabilities that require behavioral therapy to assist our loved ones to overcome emotionally stressful milestones such as potty training or self-regulation are somewhat ahead of the curve in understanding the importance of interventions.  And while neuroscience has a long way to go to fully understanding condition such as autism and fragile x, one thing that remains at minimal debate is that behavioral therapy trumps medication when it comes to long-term curbing of undesirable behaviors, particularly in young children. The beauty of SEL is the dedicated commitment to producing sound evidence-based methods gathered from some of the country’s most esteemed scholars in early childhood education.

Based on a newly jointly published edition of the Princeton-Brookings “Future of Children” Journal, SEL was presented at the Brookings forum – attended by a packed house with an eager audience ready to engage in a dialogue led withleading experts that contributed to the Spring 2017 Research Report of the journal.  The central discussion was a on the possible impact of SEL on public health, the importance of effective SEL interventions in early childhood education, the need for SEL both inside and outside the classroom, and policies to improve teacher preparation and assessment.

This forum being my introduction to SEL theories, naturally, I zeroed on in on the “need for SEL both inside and outside the classroom” part. During and after the panel, I had the opportunity to engage with  a couple of the presenters, including Dr. Clark McKown and Dr. Tim Shriver.  In the case of Dr. McKown, it was encouraging to engage in discussion and benefit from his insight on the importance of parent participation. Both of these esteemed participants at the Brookings event are part of the Collaborative for Academic, Social and Emotional Learning (CASEL), which is the world’s leading organization advancing the practice of promoting integrated academic, social, and emotional learning for all children in preschool through high school.

Dr. Shriver, a co-founder of CASEL, also serves as the co-chair of Special Olympics so our dialogue naturally drifted to discussing ways to engage children with disabilities and their families more actively in the SEL movement. It turns out the new Chancellor of DCPS, Antwan Wilson, has been part of the SEL movement with CASEL since he served as the Superintendent for Oakland Public Schools.  These are strong and promising points of connection that our Coalition will work to continuously engage with the District’s leaders in public education to find more measurable and sustainable methods of incorporating SEL both in and outside of the classroom; and available for all students. Specific to our children with disabilities, it was also warming to hear Dr. Shriver discuss the connection between physical activities/recreational sports and emotional development, of which there are exciting ideas percolating and look forward to fleshing out how these can form into affordable programs for our families, especially during the summer months in a city with few camp options for children with disabilities.

Perhaps our partnership with Georgetown to host parent engagement will also be a platform to collect data on the out-of-school time options for children with disabilities in the District and discover ways to close the gaps.  Although the American’s with Disabilities Act (ADA) prohibits discrimination based on ability, requiring after school programs, as well as all public schools and most child care centers and private schools, to develop a plan to make all facilities, programs and services available to all families, there remains several gaps in the District’s schools and other such organizations to be commitment to doing more than the bare minimal when it comes to ADA compliance. One of our key goals is to be an evidence-based advocacy organization, collecting primary data and using necessary secondary data to support our efforts to ensure the educational protection for our vulnerable children with disabilities – both in and out of school times.

At the Brookings event, Dr. McKown, a participant in the CASEL Assessment Work Group, offered some critical insight on how SEL can be come subject for dinner table discussion and the tools become useful for a variety of family structures across cultural and linguistic lines.  The Working Group, which is a multidisciplinary collaborative of leading researchers and practitioners in the fields of PreK-12 education, assessment, SEL, and related fields, also offers another space in which our Coalition can make an impact through scholarship and grassroots data collection.

As we further develop a relationship with CASEL and those that are part of its research and advocacy network, especially as it pertains to children with disabilities, the need for more a more cohesive coalition will become more critical. SEL offers a clear methodology of how District of Columbia classrooms can become inclusive environments, safe from bullying and other negative behaviors that some of our youth engage in that disproportionately target other young people with disabilities.  Thus it is a very exciting journey to learn more about evidence-based tools and assessments that include parents as active members of a school’s community of learning to increase the emotional intelligence in our children and ourselves! I look forward to more active engagement from our membership and expanding our reach throughout this great city of Washington, DC for the educational protection our children with disabilities.

In solidarity,

Chioma Mary Oruh, Ph.D.

Intersectionality and Disability Rights

Intersectional Disability OppressionWe are living in a tense political climate both locally and nationally where lawmakers seem out of sync with the needs and desires of everyday people.  When local tax cuts are proposed in the midst of one of the most unstable national climates, also proposing tax cuts, it begs the question: where do our leaders think the money to fund essentials like healthcare, education and recreation will come from?

For parents born in the 1970s and beyond, it might be difficult to conceptualize a United States of America before the passage of land mark Federal laws impacting welfare, healthcare, education and the environment on the local level. Yet, in this era of increased jeopardy to continued support of such programs., parents, particularly parents with vulnerable children with disabilities must arm ourselves with factual political history of the many laws that protect our families. And such a critical process is most effective when taking into consideration that disabilities rights do not exist in a vacuum and are rather interrelated with other critical laws impacting overlapping marginalized groups that are also organized and advocating for funding and social change.

In the now classic article by Patricia McGilll Smith, former Executive Director of the National Parent Network on Disabilities, entitled “You are Not Alone: For Parents When They Learn That Their Child Has A Disability,” she states:

…When parents learn about any difficulty or problem in their child’s development, this information comes as a tremendous blow.  The day that my child was diagnosed as having a disability, I was devastated — and so confused that I recall little else about those first days other than heartbreak. Another parent described this event as a ‘black sack’ being pulled down over her head, blocking her ability to hear, see and think in normal ways.  Another parent described the trauma as ‘having a knife stuck’ in her heart. Perhaps these descriptions seem a bit dramatic, yet it has been my experience that they may not sufficiently describe the many emotions that flood parents’ minds and hearts when they receive any bad news about their child” – You Are Not Alone

While Smith frames isolation in All Oppresssion is Connectedterms of emotions, this feeling translates politically with every new phase parents reach to access new services in the home, school and community once the reality of having children with disabilities has set in. It is important to note that isolation is essential to oppression. This is achieved by limiting the scope of understanding a problem. Not unique to isolation, once a person or a group of people adopt their aloneness, or isolation, as part of how they understand a problem and what they do about this problem, it is much easier to dismantle or manipulate this narrow interest group.  In Paulo Freire’s book The Pedagogy of the Oppressed, he brilliantly articulates the strategy of divide and rule as a fundamental dimension of the theory of oppression.  Freire states,

“As the oppressor minority subordinates and dominates the majority, it must divide it and keep it divided in order to remain in power. The minority cannot permit itself the luxury of tolerating the unification of the people, which would undoubtedly signify a serious threat to their own hegemony.  Accordingly, the oppressors halt by any method (including violence) any action which in even incipient fashion could awaken the oppressed to the need for unity…It is in the interest of the oppressor to weaken the oppressed still further, to isolate them, to create and deepen rights among them…” – Pedagogy of the Oppressed

The study entitled “Work-Family Fit:  Voices of Parents of Children with Emotional and Behavioral Disorders,” finds that one in four US households with children will have one or more children with disabilities, ranging from mild to severe, manifesting as physical, mental, or both. There are several factors informing a parent’s response to learning a child has a disability – many include socioeconomic considerations.

Beyond initial emotional response to prognosis, the reality of living with children with disabilities can be a complex arrangement of overlapping and intersecting social identities that inform the quality of life one is able to provide their child. For example, wealthy families experience raising a child with a disability differently than a family in poverty.  At the same time, sacrifices made in consideration in caring for a child with a disability can be informed by other factors gender, race and even immigration status. For example, mothers (more likely than fathers) frequently reduce their work hours or quit work altogether to care for their children with disabilities regardless of if they are married or single.  Yet at the same time, the study entitled “Work Choices of Mothers in Families with Children with Disabilities,” found that single mothers with young children with disabilities have been found to be 17% less likely to work full-time compared to a single mother whose child does not have a disability.

Also, while there is much room for study on immigrant families with children with disabilities in the US, there is a recently defended Master’s thesis in Interdisciplinary Studies from the University of Iowa by Rochelle Renee Honey-Arcement entitled, “Immigrant parents of children with disabilities and their perceptions of their access to services and the quality of services received” (Spring 2016). In this thesis Honey-Arcement recommends the need for disabilities advocates to learn about the impact that cultural differences in values and communication, along with racism and language barriers have on accessing services. And as such, recommends a need to devise ways to get this information disseminated beyond such linguistic barriers.

The famous 1966 study by James S. Coleman entitled, “Equality of Educational Opportunity,”  concluded that of all contributing factors to academic success for children, family educational and/or economic background is a bigger factor than school resources or other more popular ideas around improving student performance including: school expenditure levels, class size, and teacher quality.  Coleman’s 700+ page report was released about year after then-President Lyndon B. Johnson signed into law the Elementary and Secondary Education Act of 1965, which dedicated federal funds to disadvantaged students through the Title 1 program currently under jeopardy in funding in the proposed Fiscal Year 2018 Federal Budget by the Secretary of Education Betsy Devos.

In light of the assault on public education via the current Department of Education. This, along with the economic stress of raising a child with a disability in an unstable marketplace where concepts like Universal Basic Income, as recently spoken about by Mark Zuckerburg, do not yet have community buy-in that leads to tangible local and federal policies governing such income protection practices, it is uncertain how families will be able to cope under the current political climate.

While, typically used to describe the current politics in Europe, austerity measures are a continuous and common threat in the United States and explains the ideology of many of our law makers on both sides of the isle and across various levels of government. In a recent book entitled The Violence of Austerity (2017), edited and translated by Vickie Cooper and David Whyte, explains the impact of these policies in the United Kingdom as followed:

“Austerity, a response to the aftermath of the financial crisis, continues to devastate contemporary Britain. In The Violence of Austerity, Vickie Cooper and David Whyte bring together the voices of campaigners and academics including Danny Dorling, Mary O’Hara and Rizwaan Sabir to show that rather than stimulating economic growth, austerity policies have led to a dismantling of the social systems that operated as a buffer against economic hardship, exposing austerity to be a form of systematic violence. Covering a range of famous cases of institutional violence in Britain, the book argues that police attacks on the homeless, violent evictions in the rented sector, the risks faced by people on workfare schemes, community violence in Northern Ireland and cuts to the regulation of social protection, are all being driven by reductions in public sector funding. The result is a shocking expose of the myriad ways in which austerity policies harm people in Britain.” – The Violence of Austerity

Put to a local framework, the DC Fiscal Policy Institute offers insight in a recent position paper by Peter Tuhtsthat entitled, “A City Breaking Apart: The Incomes of DC’s Poorest Residents Are Falling, While Economic Growth is Benefiting Better-Off Residents” states:

“The income of the poorest DC households is now lower than in most major cities, and far lower than in the DC suburbs, an especially serious problem in a region where the cost of living is among the nation’s highest. DC’s persistent income inequality is also wider than in almost any other U.S. city.” – A City Breaking Apart

With these considerations, one may ask, what does this have to do with advocating for the educational rights of children with disabilities?

intersectionalityThe answer is: intersectitonality. A theoretical concept coined by lawyer and scholar Kimberle Creshaw, intersectionality is  a framework that describes how overlapping forms of discrimination and how structures make certain co-occuring identities (ex. single mothers, African American, LGBTQ, immigrant or homeless families raising children with disabilities) are vulnerable to exclusion and other forms of oppression. Intersectionality offers intellectual space to interrogate how certain privileges impact social outcomes and the role of institutional decision-making practices in policies and laws in protecting or exposing overlapping vulnerable groups. Crenshaw develops this concept primarily to explain the connections between gender and race; as both are impacted by patriarchal and racist systemic arrangements yet impacts other identifies such as sexuality, ability and socio-economic class status, to name a few.  She argues that in the absence of an intersectionality analysis, proper understanding of social issues are undermined by our inability to develop inclusive coalitions to impact change that is beyond a singular identity.

Specific to drawing intersections impacting children with disabilities, there are many lines that bring together a variety of oppressed categories. There are many intersectional forms of oppression when considering the challenges facing families raising children with disabilities. Beyond the classic sociological trinity of race, class and gender, there are sub-categories within this tripod that create nuances within the spectrum of geopolitical and socioeconomic challenges facing families raising children with disabilities.

In a study entitled the “Material Hardship in US Families Raising Children with Disabilities,” highlights that compared with 16% of children without disabilities, 28% of US children with disabilities live below the federal poverty threshold due to the additional financial expenses related to the child’s disabilities including therapy costs, specialized day care, and adaptations and modifications, etc. Through analyzing the material hardship of 42,000 US households with and without children with disabilities across four (4) domains:

  • Food insecurity
  • Housing stability
  • Telephone disconnection
  • Health care access

In review of these poverty indicators, the study found that across income levels, children with disabilities and their families experienced significantly more economic constraints that families whose children don’t have a disability.  A major poverty indicator is the ability to pay rent and/or other housing related utilities. The study finds that families with children with disabilities are 72% more likely than other families to have been unable to pay rent in the previous the previous year; and these families were 81% more likely to have had phone service disconnected for more than a day during the prior year because of nonpayment.

Familes Disabilities Hardship

To read the complete study, click here

Additionally, there are significant barriers when it comes to access to health care for families with dependent children with disabilities. These children are more likely to have access to some form of health insurance coverage, such families had to delay necessary medical and dental care more often than other families.

There are many proposed solutions to this phenomenon of poverty making due to raising a child with a disability, some of which include making adjustment to Social Security Insurance and Medicaid – access to both are under jeopardy in the proposed bill in the Congress. Additionally, with a proposed $9 billion cuts to public education as proposed by Secretary of Education Betsy DeVos, there is uncertainty surrounding the impact of promoting school choice in the largely deregulated charter schools and the protection of the educational rights of children with disabilities. The impact of such policies is already locally felt in Washington, DC, with 66 LEAs (as in DCPS and 65 public charter schools) , there is chaos at the base when it comes to creating policies that actually protect families with children with disabilities regardless of their school choice.

In conclusion, Martin Luther King, Jr is quoted for saying, “Power without love is reckless and abusive, and love without power is sentimental and anemic.” The framework of intersectionality offers powerful insight that must be guided by a love for humanity, in the spectrum of abilities that make up the human experience.  It is an expression of love to see beyond ones own privilege. And the Inclusive Prosperity Coalition looks forward to a fruitful Summer 2017 our partnership with Georgetown University Center for Excellence in Developmental Disabilities, the Deputy Mayor for Education, the Deputy Mayor’s Office of Public Safety and Justice, our various City Councilmembers and many other community partners, working hand in hand to ensure that our intersections lead to solutions for protection of children and youth with disabilities in this great city.

Public Safety Awareness Campaign – Summer 2017

DisabilityRightsAreCivilRightsIn the process of actively advocating with DC law makers and connecting with dedicated individuals and organizations working diligently for children and youth with disabilities and the families responsible for their care, the most important lesson is the power of coordination and organization. There’s a lot of housekeeping to be done within our coalition, of which post-Memorial Day weekend, we will actively begin engaging our membership to establish a more democratic process and division of labor, so stay tuned for upcoming meetings and gatherings both online and in person geared at engaging our membership.

We are lucky to be part of such an active and well-informed network and look forward to active collaborations with families, self-advocates, advocacy organizations, researchers, lawyers, doctors, government agencies and law makers. It truly is take a village to raise a child and we look forward to being productive members of our community in this great city of Washington, DC and to deliver tangible results for the children and youth directly impacted by the effectiveness of our organizing and collaborative efforts.

As we get our house in order as a coalition, we are also exploring collaborations with the Georgetown University Center for Excellence in Developmental Disabilities, the University Legal Services for the District of Columbia, DC Councilmember Charles Allen’s team (Chair of the Judiciary Committee) and the District’s Deputy Mayor of Public Safety and Justice.  The goal is to engage in a Public Safety Awareness Campaign to empower families with children with disabilities with fact-based information about opportunities to improve relations with our families and local law enforcement agencies.

The Coalition’s main function is  to ensure that the District public school systems are meeting all requirements for public awareness, child find and to provide free appropriate public education (FAPE), as protected by  the Individuals with Disabilities Act (IDEA amended in 2004, the Rehabilitation Act of 1973 and several other local laws.

A recent report issued by the University Legal Services of DC recently published a report entitled “Restraint, Seclusion and Abuse in District of Columbia Public Schools and the Need for Accountability”. This report highlights the troubling trend within public and public charter schools to utilize questionable practices that range from being mildly to grossly unethical methods to address incidents involving children with disabilities.  This report highlights a key aspect of how the preschool to prison pipeline works, with our most vulnerable children with disabilities being targets of dysfunctional school public safety practices. Yet, such issues are not isolated to the school environment.

A key part of the advocacy work is also geared to increase parent engagement to improve on educational outcomes. To do so effectively, a main goal is to provide other community support to assist with improving the quality of life for the families in variety of social areas and to equip families with community resources that address some of their greatest needs concerning care of a loved one with a disability. In terms of public safety concerns, there are a range of issues facing families, especially those with a loved one with a developmental disability such as autism or a psychiatric disability such as schizophrenia at the schools or other public places as well as at home.

In a 2016 report by the Ruderman Family Foundation, it notes that individuals with disabilities make up one-third and one-half of all people killed by law enforcement officers and are the majority of people killed in use-of-force cases where officers are either found to be at fault or are exonerated. One of the key findings of this report is that the establishment of crisis intervention trainings (CIT) at local police departments alone does not lead to positive outcomes.

Having frequent and consistent person-centered cultural awareness training with the public safety sector  are more proven methods of improving community relations with government services across a range of sectors including law enforcement.

To join in the planning for this campaign to host a series of trianings touching on a variety of aspects of disabilities awareness to promote greater public safety awareness, drop a line and let us know how you’d like to contribute to these efforts.

Dear Parents, Your Advocacy Matters.

For many families, taking on the educational system can be very intimidating and/or disillusioning. The District of Columbia has a long and sordid history of maltreating people with developmental disabilities.  And while many things have improved since the prolonged fight for the rights of people with intellectual and developmental disabilities in Evans v. Washington, there is still a long road ahead to ensure that the District is in compliance with federal laws established to protect the rights of individuals with disabilities.  In the case of DC Public Schools, there are many systematic tools put in place through both DCPS and the Office of State Superintendent for Education (OSSE), that make it difficult for families to access the necessary services that are legally protected through high court decisions or through federal and/or local legislation.

Too often, families take on individual fights against a highly organized, albeit dysfunctional, school system and lose.  Simply, it seems like DCPS or OSSE put their bid on not providing free appropriate public education or settling for mediocre improvement metrics than making the necessary adjustments within an Individualized Education Plan (IEP) to ensure that the District of Columbia, the nation’s capital, become a leader in Special Education. The school system tends to take the legal hammer against families that dare to sue for failure to provide FAPE, in part, because there are very little incentives to do otherwise.  For every family that musters up the energy, money and gumption to fight for their child in the schools or in the courts, there are fifty other families too exhausted, poor and fearful of negative consequences to engage. And for many other families, they put their blind trust into the school system and take at face value that this system is functional. For all these reasons, organizing and advocacy is essential.

There are many great individual schools with progressive principals and teachers that are exceptional in services in both general and special education.  Organization and advocacy protects them as well. to early childhood education, it is also an unfortunate fact that because children only spend such a small time of their academic experience in Pre-K that schools simply wait out the clock for when a “problem” family that demands what can be perceived as too much ages out of their rights to advocate at that level. And it is only the most proactive of parents,for example, that will seek the necessary legal counsel to build a sound defense that will back track to educational malpractice at the Pre-K level when their 8th grader still doesn’t know how to read or write with maladaptive social skills. And truthfully, the District of Columbia has a long history institutional dysfunctions with the treatment of people with developmental disabilities. To learn more about this history, read the post on The Lessons of the Evans Case and Advocacy for Children with Disabilities in DC.

There is safety in numbers. There is protection in legislation. And there is value to knowledge.  When parents come together with community members, including teachers and the school administration, political organizations, legal counsel and businesses, our voices are amplified. And when parents come together with these community partners to engage our elected officials, it changes everything.  Advocacy is beyond protest. Advocacy is constant, protracted engagement. There are many other ways to be more proactive and engaged in DCPS. Not only do studies show that all levels parent involvement raises the potential of a child’s academic success but parents united via PTAs and PTOs to expand the village, simply moves mountains. And it is in shifting mountains that miracles are possible for children with disabilities, who simply need a level playing field to have a shot at reaching their highest academic potential. To learn more about how to advocate to DC Public Officials, click here.

The Balkanization of Special Education in Washington, DC

Shattered PersonIn a recent comparative study of the Child Find process in three counties Maryland and three counties in Virginia to compare with the Child Find process in Washington, we found that of these six counties the District of Columbia is the only place that has a decentralized Child Find process for the age group 3 to 5 years old. This means there is no one public authority that ensures that school-aged children at this very young age group of 3 to 5 years old, regardless of where they are enrolled (i.e.  inclusive of public, charter, private, home school, etc.) are identified for having a developmental delay or disability.

Child Find is a mandate of the Individuals with Disabilities Education Act (IDEA) and it is a process that requires all school districts to identify, locate and evaluate all children with disabilities, regardless of the severity of the disability.  As part of this process, all States and the District of Columbia are required to develop and implement a practical method of determining which children with disabilities are receiving special education and which children do not (20 U.S.C. 1412(a)(3); Wrightslaw: Special Education Law, pages 72, 206-207). This mandate applies to all children who reside within a State, including children who attend public, charter or private schools, children who are home-schooled, highly mobile children, migrant children, homeless children and children in the foster care system.  It is important to note that this process does not preclude enrollment in a Special Education program nor does it insist that reporting agency “label” the children.

To this end, our study looks at three counties in Maryland (Howard, Montgomery and Prince George’s) and three counties in Virginia (Arlington, Alexandria, Fairfax).  While there are variations between the Child Find processes in each county impacting particularly birth to 5 years old, Washington, DC is unique in its approach to the Child Find process.  Of these 6 counties reviewed, the District of Columbia is the only “State” that offers a separate Child Find process for DC Public schools, the DC Public Charter Schools and private Schools.

In attempts to understand the rationaleUnited Child Find and history of fragmentation, or
balkanization, of the District’s Child Find practice, it is important to understand the factors leading to the DC Public Education Reform Amendment Act of 2007, which begun the process of separating authorities between public and public charter schools.  This act separated DC Public Charter Schools from DC Public Schools, which rescinded authority of the Public Charter Schools Act of 1996 (effective September 1999) which gave chartering authorities to the former DC Board of Education and the then-new entity, the DC Public Charter School Board – which together, both boards were allowed to charter up to 20 schools per year, granted for up to 15 years and with unlimited renewals.  The law also required charter schools to annually report to their chartering board on academic progress and produce an annual audited financial statement. Additionally, regulatory authority was given to both boards with powers to close down an under-performing charter if after 5 years have not met their academic goals or at anytime for financial mismanagement.  This Act of 1996 also established a Uniform Per Pupil Funding Formula, of which all students in both DCPS and DCPCS are funded at the same dollar amount.

The Reform Act of 2007 restructured the governance of DCPS, revoked regulatory authority from the DC Board of Education, placing the public school system under the control of the Executive Office of the Mayor via the newly created cabinet level pospition of the Deputy Mayor of Education.  This means that the leadership of DCPS (the Chancellor) reports directly to the Mayor. This law also placed chartering responsibilities entirely under the DC Public Charter School Board.  This law also made other critical changes including: changing the name of the “State Education Office” to become the “Office of the State Superintendent of Education” (OSSE); established the Interagency Collaboration and Services Integration Commission (which includes the Mayor, Chairman of the DC Council, Chief Judge of the DC Superior Family Court, the Superintendent of Education, Chancellor of DCPS, Chair of the DC Public Charter School Boards and 14 other members).  The DC Board of Education became the State Board of Education, significantly reducing it’s authority over DCPS. The Act of 2007 also called for an Ombudsman to help meet the goal of greater transparency and accountability for public education in the District, a role which has not yet met its intended role.

balkanizationCurrently, there are 118 public charter schools, with 65 non-profit organizations running them. Each organization (that is 65 non-profit organizations) has authority to individually serve as its own Local Education Agency (LEA). LEAs report directly to the State Education Agency (in the DC, that body is OSSE) and as such OSSE monitors and evaluates each LEA appropriately budgeting for the education of children with disabilities. As noted earlier, DC is the only “State” in the DMV that has so many LEAs, while all six counties reviewed in Maryland and Virginia each have one LEA reporting to the State authority.

Imagine the amount of reduced administrative functions and money saved if DC would take from example from our neighbors? Imagine the increased accountability if there was one LEA in DC versus 66 (DCPS plus each non-profit entity running the 118 public charter schools)  or more different reporting agencies – each with empowered to determine it’s own rules around how it services children with disabilities in the District? And imagine, if there was a central place where families could go to when seeking an educational evaluation for their little one who is suspected of having a delay or disability?

To gain a greater appreciation of the problem with the current decentralized system in the District as it pertains to the IDEA, its important to recap on history.  The term “balkanization” emerged in the early 20th century to define the political chaos in Europe that led to World War I. In the late 19th century, after the fall of the Ottoman Empire in the Middle East, many of the former territories under Empire became several, small independent nation-states. While state sovereignty seemed like a great idea, in this case, it led to uneven development with larger countries in Europe (such as England and France) playing favorites among the newly independent states. Governing was tense and in many cases impossible. Eventually, it would lead to one of the bloodiest wars in world history and it the aftermath would also be a contributing factor to World War II and much of the problems still facing the Middle East.

Bringing it back to Washington, DC: the Nation’s Capital.  Balkanization is a generally frowned upon practice in world politics because it leads to anarchy, which makes governing very difficult. Why, then, in the world (pun intended) would the District of Columbia jeopardize the care of children with disabilities, which are some of its most vulnerable citizens, to such a problematic practice in public policy?

The answer to this is certainly not because its easier to decentralize because having over 119 LEAs means much more work to create accountability.  And to make matters worse, instead of being a leader, DCPS is attempting to further expand the balkanization by promising (without documentation) to use the monies offered in the Enhanced Special Education Act of 2014 (which is yet to be funded) to further decentralize the Child Find process, thus creating more LEAs. This is simply an insane way to govern.

To join in efforts to organize in both DCPS, DCPSC and any other educational system in the District of Columbia, the Inclusive Prosperity coalition is currently in a Parent Find process as it is pressing that our parents organize ourselves amongst ourselves to ensure that our children collectively get all the rights afforded to them under Federal and District law. Click here to become a member

Correction:  The article previously stated incorrectly that each of the 118 public charter schools operated as its own Local Education Agency (LEA) while in reality there are 65 LEAs due to multiple schools being run by the same non-profit entity. (Correction made 5/17/2017)

Dear Parents, Your Advocacy Matters.

To blog with us and share your story, please email motheringhands@mail.com with subject line “Inclusive Prosperity Blog Post”.

For many families, taking on the educational system can be very intimidating and/or disillusioning. The District of Columbia has a long and sordid history of maltreating people with developmental disabilities.  And while many things have improved since the prolonged fight for the rights of people with intellectual and developmental disabilities in Evans v. Washington, there is still a long road ahead to ensure that the District is in compliance with federal laws established to protect the rights of individuals with disabilities.  In the case of DC Public Schools, there are many systematic tools put in place through both DCPS and the Office of State Superintendent for Education (OSSE), that make it difficult for families to access the necessary services that are legally protected through high court decisions or through federal and/or local legislation.

Too often, families take on individual fights against a highly organized, albeit dysfunctional, school system and lose.  Simply, it seems like DCPS or OSSE put their bid on not providing free appropriate public education or settling for mediocre improvement metrics than making the necessary adjustments within an Individualized Education Plan (IEP) to ensure that the District of Columbia, the nation’s capital, become a leader in Special Education. The school system tends to take the legal hammer against families that dare to sue for failure to provide FAPE, in part, because there are very little incentives to do otherwise.  For every family that musters up the energy, money and gumption to fight for their child in the schools or in the courts, there are fifty other families too exhausted, poor and fearful of negative consequences to engage. And for many other families, they put their blind trust into the school system and take at face value that this system is functional. For all these reasons, organizing and advocacy is essential.

There are many great individual schools with progressive principals and teachers that are exceptional in services in both general and special education.  Organization and advocacy protects them as well. to early childhood education, it is also an unfortunate fact that because children only spend such a small time of their academic experience in Pre-K that schools simply wait out the clock for when a “problem” family that demands what can be perceived as too much ages out of their rights to advocate at that level. And it is only the most proactive of parents,for example, that will seek the necessary legal counsel to build a sound defense that will back track to educational malpractice at the Pre-K level when their 8th grader still doesn’t know how to read or write with maladaptive social skills. And truthfully, the District of Columbia has a long history institutional dysfunctions with the treatment of people with developmental disabilities. To learn more about this history, read the post on The Lessons of the Evans Case and Advocacy for Children with Disabilities in DC.

There is safety in numbers. There is protection in legislation. And there is value to knowledge.  When parents come together with community members, including teachers and the school administration, political organizations, legal counsel and businesses, our voices are amplified. And when parents come together with these community partners to engage our elected officials, it changes everything.  Advocacy is beyond protest. Advocacy is constant, protracted engagement. There are many other ways to be more proactive and engaged in DCPS. Not only do studies show that all levels parent involvement raises the potential of a child’s academic success but parents united via PTAs and PTOs to expand the village, simply moves mountains. And it is in shifting mountains that miracles are possible for children with disabilities, who simply need a level playing field to have a shot at reaching their highest academic potential. To learn more about how to advocate to DC Public Officials, click here.

The Lessons of the Evans Case and Advocacy for Children with Disabilities in DC

A little over 40 years ago, on February 23, 1976, Evans v. Washington brought claims of mistreatment against Forest Haven, the city’s premiere institution for people with intellectual and developmental disabilities. This historic class action case not only highlighted the unconscious biases that led to low and high levels of government failure that stripped people with intellectual and developmental disabilities of basic protections of human rights, it also exposed the extent to which unchecked discrimination will go. While the Evans case as closed and the District of Columbia has made vast improvements in some institutional practices regarding the treatment of people with intellectual and developmental disabilities, there remains an uphill battle to create true social equity that humanizes the experiences of people with these forms of disabilities and offers adequate support to ensure an improved quality of life for them.  As Councilmember Vincent Gray (D – Ward 7), who started his career at The Arc of DC, stated,

“We had a focal point for advocacy, and that was Forest Haven,” recalls Gray. “But we’re trying to create a community-based system that is going to be a lot more diffuse, a lot more spread out, a lot more diverse than what we have now. And the advocacy and monitoring efforts that are going to be necessary are going to be infinitely more difficult.” – Martin Austermuhle, “I. Fighting Forest Haven,” in From Institution to Inclusion (WAMU 88.5 News)

There is no place more evident of the need for continued advocacy and monitoring efforts to ensure that basic human rights and the rights of citizenship for people with developmental disabilities are protected than in the DC Public School system, more specifically, in Early Childhood Education.

The story of the Evans family, the lead plantiff in the Evans class action lawsuit, is one of great societal tragedy. The story, well captured in a WAMU 88.5FM Radio special edition entitled From Institution to Inclusion (2016), does not begin when Harold Evans filed a lawsuit in 1976 after the death of his first born daughter, Joy Evans, at Forest Haven. She was 17 years old. It is important to understand the story of Joy Evans and her family when she was diagnosed at 2 years old with a developmental disability and, like so many other children, was placed at Forest Haven where she not only suffered injuries at the hands of the institution, but also had few opportunities for recreation or education.

If it wasn’t for the courage of not only Harold Evans but his wife Betty Evans, who died in 2010, and the community support of advocates that fought diligently from the 1960s until now, there might still be a Forest Haven in Washington, DC.  And even with it’s closure in 1991, with the District rightfully owed its due credit for being one of the first cities in the United Stated to de-institutionalize the treatment of people with developmental disabilities, the same mentality that lazily classified children with developmental disabilities as unteachable and relegated to a “warehoused, out of sight, out of mind, 25 miles from the city,” is still dominant in the school system’s approach to this population.

There’s a national dialogue around best practices in the delivery of Special Education in the United States. It sometimes seems like the District of Columbia is a vacuum, isolated in its own self-contained environment, and does not actively participate or apply standard practices that other places in the country do. Where most states provide have a 60-days from the point of identification of a child suspected with a learning disability to be evaluated, the District of Columbia takes 120 days (4 months). For example, it makes it the only place in the country that takes that long to evaluate a child for a developmental delay of disability.  There has been progressive efforts to change this policy, with the City Council passing Bill 20-724,  the “Enhanced Special Education Services Act of 2014,” which was sponsored by former-Councilmember David Catania and co-sponsored by current Councilmembers Anita Bonds, Mary Cheh, David Grosso and Kenyan McDuffie.  Yet, as the law requires that evaluations take place within 60 days from parental consent or within 90 days of a referral, the Children’s Law Center reports that this provision can only go into effect once funding is available, of which the current budget (FY17) passed by the Mayor and DC Council failed to incorporate.

To be prepped for effective advocacy to ensure that the FY18 budget adequately funds Special Education in DC Public Schools, first we must organize and join the Inclusive Prosperity Coalition. Next, we must galvanize support far and wide from the community at large – especially people and organizations that have a historic dedication to protecting the rights of children with disabilities. And, most importantly, we must mobilize an effective campaign to reach the minds and hearts of our Mayor and DC City Council to do what is right and just for children with disabilities. Are you ready? Lets go! Join now.

It Takes a Village to Achieve Inclusive Prosperity in the District of Columbia

On March 7, 2017, Mayor Muriel Bowser unveiled the District of Columbia’s Economic Strategy for the upcoming Fiscal Year 2018. In the press release for this plan, Mayor Bowser stated,

“I am proud to share our new economic strategy, one that reflects DC’s values and helps ensure all Washingtonians share in our continued prosperity…Every day, we are showcasing how Washington, DC’s diverse and innovative community is driving our economy. I am confident that this framework will accelerate our progress as a leader for inclusive prosperity by creating opportunities that are accessible to all, supporting longtime businesses and residents, and benefitting our most disadvantaged communities.”

With this in mind, the Inclusive Prosperity Coalition promotes the educational rights children with disabilities in the District of Columbia as deserving of free appropriate public education (FAPE), as protected by section 504 of the Rehabilitation Act of 1973 and the Individuals with Disabilities Act of 1997 (IDEA). Prior to the IDEA, over 4 million children with disabilities in the United States were denied appropriate access to public education – many of whom were denied entry into public schools altogether, while others were place in segregated classrooms, or in regular classrooms without adequate support for their special needs (Katsiyannis, Yell, Bradley, 2001; Martin, Martin, Terman, 1996; US Department of Education ,2010; American Psychological Association, 2017).

If, in fact, the children are the future then it is imperative that concept of inclusion be framed in the context of social justice and equitable access to things available to all citizens.  To this end, it is important to define the “inclusion”.

Inclusion is a process in which persons with disabilities or special health care needs are actively participating in recreation, social, educational and developmental opportunities along with peers without disabilities through:

  • Providing opportunities for choice
  • Providing necessary support to ensure recreation is fun and matches skills with challenge
  • Creating environments for meaningful engagement
  • Not a one-time event or separate service
  • Process of learning, preparing, experiencing and growth with each person in each recreation opportunity

When it comes to education, inclusion is protected by Federal and District law.  Unfortunately, even with existing statute, there are many cultural barriers that prevent individuals, organizations and even policy makers in government agencies (including and especially the public school system) from actualizing these legislative guidelines protecting the rights of individuals with disabilities.  There are many unconscious biases that prevent people from doing what’s right and necessary to promote the best interest of individuals, particularly children, with disabilities.

To this end, a key part of successful advocacy for the rights of children with disabilities is education through cultural competency training.  It is trough these sorts of training that transformation can take place inside and outside the political process of budgets, policies and legislation.