The city of Seattle’s July 1st ordinance, closely followed by Starbucks’ July 9th announcement that the company will eliminate their use of plastic straws globally by 2020, have prompted a national discussion around the intersection of sustainability and accessibility. While these recent policy decisions are at the forefront of a necessary environmental push to reduce plastic waste in oceans, plastic straw bans promote sustainability at the cost of accessibility to all, serving as poignant examples of how cities and corporations alike often neglect the needs and voices of people with disabilities.
On July 1st, Seattle became the first major U.S. city to ban the use of plastic straws and utensils, with businesses facing a fine of up to $250 if they are found to be in violation of the ban. Starbucks followed suit a little over a week later, announcing a gradual phasing out of single-use plastic straws through use of a strawless lid or alternative-material straw options available in their stores around the world. This global commitment is projected to eliminate more than one billion plastic straws per year from Starbucks stores. Other businesses and cities are likely to follow suit, with American Airlines, San Francisco, and New York having already vowed or currently considering eliminating the use of straws. Out of all plastic that pollutes the oceans, the question remains: why straws?
Straw bans have quickly gained popularity in recent months because they serve as an easy, low-commitment, initial entry point into the larger issue of plastic pollution. It is simple, effective, and relatively convenient for able-bodied consumers to go without a plastic straw. Buoyed by catchy slogans like “Strawless in Seattle,” “Skip the Straw,” and #stopsucking, straw bans have entered the public’s stream of consciousness with the help of various celebrity campaigns and a disturbing image of a sea turtle with a straw stuck through its nose. The bans help consumers feel that they are doing an environmental good by forgoing the straw while simultaneously raising awareness about the issue of plastic waste in oceans. Yet, bans like Seattle’s ordinance and Starbucks’ recent straw-free announcement exclude the fact that for many people with disabilities, using a plastic straw is a matter of accessibility. Straws are not an amenity or a luxury, but a necessary form of assistive technology that allow consumers with limited mobility to drink. If a business does not include straws when serving beverages, customers with a disability are denied access to a right as basic as something to drink.
Proponents of the straw ban are quick to point out potential accommodations that can be included: there are other materials of straws available, both Seattle and Starbucks’ new policies grant an exception for those with medical or physical needs, and people who truly need straws should bring their own reusable ones. Although all these accommodations exist, they are not friendly to people with disabilities. For consumers who need straws for medical or physical reasons, materials other than plastic do not get the job done. Paper straws dissolve easily and can become a choking hazard, while metal can be too hot or cold, and at times is even painful for those with symptoms like jitters. Plastic straws, although not the most sustainable choice, are currently the best option available due to their low-cost, flexibility for positioning, and ability to safely conduct liquids of different temperatures. Denying people with disabilities access to plastic straws not only restricts what they are able to drink and when they are able to do so, but is fundamentally an issue of accessibility.
Both the city of Seattle and Starbucks included clarifying statements in their respective policies that exceptions would be granted in cases of medical or physical needs. Seattle’s ordinance grants a yearlong exception for those with disabilities through a “waiver for flexible plastic straws, which can be provided to customers who need such a straw due to medical or physical condition” (Archie, Paul 2018). When questioned by the disability community, Starbucks clarified their position in an email, saying “customers are still able to get a straw — made from alternative materials — and we will work with the disability community to ensure we continue to meet their needs going forward” (Archie, Paul 2018). Yet, in the case of Seattle, the unfortunate reality is that there does not seem to be widespread awareness of these exemptions. Even if businesses are made aware and have knowledge of an exemption, there is no guarantee that they will automatically comply. This disheartening principle may also play out in Starbucks stores across the country, in addition to the issue that straws made from “alternative materials” are unfriendly for people with disabilities’ use.
Before you ask why can’t people with disabilities merely bring their own reusable straw, take a moment and reflect on why is it that everyone, regardless of ability, doesn’t bring their own straw? Their own reusable mug? Or reusable bag? Simply put, the burden of accessibility should not fall upon people with disabilities. If those who are able-bodied should not be required to carry their own straw around with them, neither should individuals with mobility problems or medical needs. Instead of constantly asking what people with disabilities should be doing to solve the problem, the conversation needs to shift to think of how we can make items accessible to all.
Straw bans are well-intentioned but create a barrier to access for people with disabilities, and the conversation surrounding the bans is representative of a larger issue at hand: why do people with disabilities not have a seat at the decision-making table? By leaving individuals who live the experience of having a disability out of the policy-making conversation, public policy generated by cities and companies alike will continue to exclude those with disabilities. Neither Seattle nor Starbucks appears to have consulted individuals or organizations associated with disability, even when groups such as the Seattle Commission for People with DisAbilities, a volunteer organization whose purpose is to advise the city council or agencies on disabilities issues, are present in the public sphere and more than willing to contribute their thoughts and ideas. By including different voices and perspectives at the decision-making stage of the policy process, sustainability and accessibility can collaborate and complement one another. There is not an absolute choice between one or the other, and with some creative thinking, policies can be designed to be both sustainable and accessible. Inclusivity can ensure environmentally-conscious ideas such as the straw ban do not come at the cost of denying the right to assistive technology.
Julia Camilli (Wellesley ’20)
1. Anapol, Avery. “Seattle Plastic Straw, Utensil Ban Takes Effect.” TheHill, Capitol Hill Publishing Corp., 2 July 2018, http://thehill.com/policy/energy-environment/395118-seattle-plastic-straw-utensil-ban-takes-effect.
2. Archie, Ayana, and Dalila-Johari Paul. “Why Banning Plastic Straws Upsets People with Disabilities.” CNN, Cable News Network, 12 July 2018, https://www.cnn.com/2018/07/11/health/plastic-straw-bans-disabled-trnd/index.html.
3. Danovich, Tove, and Maria Godoy. “Why People With Disabilities Want Bans On Plastic Straws to Be More Flexible.” NPR, NPR, 11 July 2018, https://www.npr.org/sections/thesalt/2018/07/11/627773979/why-people-with-disabilities-want-bans-on-plastic-straws-to-be-more-flexible.
4. @LCarterLong. “Fabulous. Appreciate you sharing it. Will do the same! RT @JoyceTakako: @JodyJotes @DorfmanDoran @DisVisibility @DREDF @LCarterLong When I don’t have enough spoons to deal with the non disabled I just keep posting this chart. I’m tired.” Twitter, 14 July 2018, 5:59 a.m., https://twitter.com/LCarterLong/status/1018117737405603845.
5. Richardson, Valerie. “Plastic Straw Bans Won’t Save Oceans: ‘We’re Trading a Lot for Nothing’.” The Washington Times, the Washington Times, LLC, 12 July 2018, https://www.washingtontimes.com/news/2018/jul/12/plastic-straw-bans-wont-save-oceans-alarm-disabled/.
6. “Starbucks to Eliminate Plastic Straws Globally by 2020.” Starbucks Newsroom, Starbucks Corporation, 9 July 2018, https://news.starbucks.com/press-releases/starbucks-to-eliminate-plastic-straws-globally-by-2020.
The rights and needs of people with disabilities are being increasingly recognized in the human rights and development fields. However, these same rights and needs have been historically overlooked in the context of migration. Until 2010, when the Office of the United Nations High Commissioner for Refugees called upon states and UN agencies “to protect and assist refugees with disabilities against all forms of discrimination and to provide sustainable and appropriate support in addressing all their needs,” there had been no disability dimension integrated into international mandates or policies on migration (Refugees and Migrants with Disabilities, 2017).
There are 244 million international migrants (individuals residing in a country different from their country of birth) living all over the world, representing 3.3% of the world’s population (Connor, 2016). This absolute number is up from 173 million in 2000 and 220 million in 2010. The United States is home to more international migrants than any other country – 46.6 million – but only 14% of its population is foreign-born, compared to 28% and 22% of Australia and Canada’s populations, respectively (Connor, 2016). Sixteen million refugees – individuals who cross borders seeking protection from war, persecution, and violence – account for almost 8% of the total worldwide population of international migrants (Connor, 2016).
There is a lack of data regarding the number of international migrants with disabilities, but it is evident that immigrants and refugees with disabilities are more likely to be sidelined in every aspect of humanitarian assistance due to physical, environmental, and societal barriers against accessing information, health, and rehabilitation services and human rights protection (Refugees and Migrants with Disabilities, 2017).
Aside from the challenges they face before and during forced displacement, the legal process – for all refugees, regardless of ability or disability – is long and arduous. Refugee resettlement requires numerous administrative steps before being assigned to a domestic resettlement location and prior to entry into the United States, including: 1) registration with the UN High Commission on Refugees or UNHCR, 2) multiple in-depth interviews, 3) security checks by the F.B.I., the National Counter-terrorism Center, the Department of Homeland Security, the Department of Defense, and the intelligence community, 4) biometric data collection, 5) a cultural orientation class, and 6) a medical check (U.S. Refugee Admissions Program, 2017). Refugees with disabilities are at risk of not being approved for domestic resettlements if they have a history of or significant risk for harmful behavior toward themselves or others (Disability and Immigration Law in the United States of America, 2013).
The challenges for refugees with disabilities have only been heightened with immigration laws and policies currently in flux. President Trump’s promise to rigorously enforce immigration laws – ending the selective enforcement policies of the Obama administration where individuals who had committed crimes were targeted – is haunting parents of children with disabilities who are in the US illegally (Wiener, 2017). Parents can choose to relocate with their children, to Mexico for example, but many of them would not get the same financial support or quality of care for their children with disabilities (Wiener, 2017). And many of the children were born in the US and are US citizens.
In his first address to a joint session of Congress in February of 2017, President Trump advocated for a shift toward a merit-based system of immigration (Perry, 2017). This new system would prioritize high-skilled, well-educated individuals who would likely never need public assistance – Trump even cited Australia and Canada as examples of countries that give preferences to individuals based on education, employment, and financial means (What a ‘Merit-Based’ System Would Mean, 2017).
The US has actually been somewhat of a trailblazer with regards to refugee admission policy as it related to refugees with disabilities. In 1996, US policy transitioned away from its primary emphasis on accepting those facing political persecution by introducing a new system for determining refugee resettlement. This revised system had an enhanced focus on groups of varying levels of priority, with the “priority one” level given to the most vulnerable, including people with disabilities (Mirza, 2010). This is in sharp contrast to Canada’s immigration policy: the decades-old Immigration and Refugee Protection Act allows for people to be turned away if they “might reasonably be expected to cause excessive demands on health or social services” (Zaikowski, 2017). This exclusionary policy harkens back to the outdated concept, rooted in a combination of eugenics and utilitarian economics, that people with disabilities are not contributing members of societies and they consume too many resources.
If President Trump’s recent comments are any indication, he would like to see a shift away from this priority given to the most vulnerable refugees (like individuals with disabilities) and only accept individuals who will be “useful” in a purely economic sense of the term. This is concerning in many regards: first of all, who has the power to determine somebody’s ‘merit,’ a concept that is fairly abstract and a word that evades definition even on paper? Chances are, given the rest of President Trump’s government appointments during his term thus far, they will not be particularly well-suited to complete the task they have been assigned (in this case, vetting refugees based on merit) and certainly not be equipped with the knowledge or expertise to consider the disability dimensions of the process. Even more appalling is the prospect of rejecting individuals who would potentially need public assistance – we have to look just north of our border to hear heartbreaking stories of families denied asylum in Canada because one of their children has a birth defect or Down syndrome.
As best stated by David Perry in a headline for his article appearing in The Washington Post last fall, “under Trump, fighting for disability rights means fighting for immigration rights.” He recounts the harrowing tale of a young girl with cerebral palsy who moved to the US with her parents when she was only three months old to receive better medical care (Perry, 2017). During an ambulance ride last October, immigration authorities stopped the vehicle at a checkpoint, determined she was undocumented, and insisted on following her into the operating room before taking her into custody (Perry, 2017). While most people understand the need for immigration laws, this particular scenario struck many as an egregious lack of compassion. It is still an open question how to balance immigration constraints with humanitarian needs, especially for those with disabilities.
Angelica Griggs-Demmin (SNHS ’19)
Connor, P. (2016, December 15). International migration: Key findings from the U.S., Europe and the world. Retrieved April 20, 2018, from http://www.pewresearch.org/fact-tank/2016/12/15/international-migration-key-findings-from-the-u-s-europe-and-the-world/
Disability & Immigration Law in the United States of America. (2013). Retrieved April 20, 2018, from http://www.ccdonline.ca/en/socialpolicy/access-inclusion/disability-and-immigration-law-in-usa
Hurley, L. (2018, January 20). Supreme Court to decide legality of Trump travel ban. Retrieved April 20, 2018, from https://www.reuters.com/article/us-usa-court-immigration/supreme-court-to-decide-legality-of-trump-travel-ban-idUSKBN1F82EY
International Migration Report: United Nations of Department of Economic and Social Affairs. (2017). Retrieved April 20, 2018, from http://www.un.org/en/development/desa/population/migration/publications/migrationreport/docs/MigrationReport2017_Highlights.pdf
Mirza, M. (2010, July). Resettlement for disabled refugees. Retrieved April 20, 2018, from http://www.fmreview.org/disability-and-displacement/mansha-mirza.html
Mirza, M., & Heinemann, A. W. (2011). Service needs and service gaps among refugees with disabilities resettled in the United States. Disability and Rehabilitation, 34(7), 542-552. doi:10.3109/09638288.2011.611211
Mirza, M., Luna, R., Mathews, B., Hasnain, R., Hebert, E., Niebauer, A., & Mishra, U. D. (2013). Barriers to Healthcare Access Among Refugees with Disabilities and Chronic Health Conditions Resettled in the US Midwest. Journal of Immigrant and Minority Health, 16(4), 733-742. doi:10.1007/s10903-013-9906-5
Perry, D. (2017, October 28). Perspective | Under Trump, fighting for disability rights means fighting for immigration rights. Retrieved April 20, 2018, from https://www.washingtonpost.com/news/posteverything/wp/2017/10/28/under-trump-fighting-for-disability-rights-means-fighting-for-immigration-rights/?utm_term=.197ea39a3a6f
Refugees and migrants with disabilities. (2017). Retrieved April 20, 2018, from https://www.un.org/development/desa/disabilities/refugees_migrants_with_disabilities.html
Timeline of the Muslim Ban. (2017, December 05). Retrieved April 20, 2018, from https://www.aclu-wa.org/pages/timeline-muslim-ban
U.S. Refugee Admissions Program. (2017, January 20). Retrieved April 20, 2018, from https://www.state.gov/j/prm/ra/admissions/
What A ‘Merit-Based’ Immigration System Would Mean. (2017, March 04). Retrieved April 20, 2018, from https://www.npr.org/2017/03/04/518461949/what-a-merit-based-immigration-system-would-mean
Wiener, J. (2017, May 19). The Deportation Fears of Immigrants With Disabled Children. Retrieved April 20, 2018, from https://www.theatlantic.com/health/archive/2017/05/deportation-disability/526986/
Zaikowski, C. (2017, February 03). Canada is a progressive immigration policy dream – unless you have a disability. Retrieved April 20, 2018, from https://www.washingtonpost.com/posteverything/wp/2017/02/03/canada-is-a-progressive-immigration-policy-dream-unless-you-have-a-disability/?utm_term=.50884530c496
NOTE: For more information on this issue see: Trump Administration Seeks to Bar Immigrants With Disabilities by Michelle R. Davis. Found at:
When American society implements policies for inclusion of people with disabilities during early childhood, a tremendous growth will be seen in the social awareness and empathy of the next generation. Teachers and early intervention service providers should be aware of new policy because ultimately it is up to education providers to implement these policies in their classrooms and lay the groundwork for normalizing disability within their students’ everyday life. The Department of Health and Human Services and the Department of Education’s 2015 policy statement on the inclusion of children with disabilities in early childhood programs provides an overview, guidelines, and recommendations for such action.
The underlying reasons for inclusion are backed by scientific studies and legal foundations, as well as economic benefits to society. The Individuals with Disabilities Education Act (IDEA) requires equal opportunities for children with disabilities from birth to age 21. Part B of IDEA mandates special education services and related services for children with disabilities aged three to 21 delivered in the least restrictive environment (LRE). Part C of IDEA provides legal basis for early intervention services for all qualifying infants and toddlers in natural environments, such as the home and the community. The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 further prohibit discrimination due to disability. The Head Start Act and the Child Care and Development Block Grant Act also support inclusion opportunities for children with disabilities. These laws already dictate the requirements of schools to provide their students with disabilities with equal educational services in the least restrictive environment possible, and the 2015 policy statements reinforces and provides direction for schools to follow through with these services in early childhood programs.
In addition to the scientific and legal foundations for inclusion, the economic benefits to society are significant. Teachers and early intervention service providers also play an integral role in ensuring this aspect of inclusion. Studies conducted on children with disabilities have shown that when children are included from an early stage of development, their social-emotional skills, developmental abilities, and academic prowess are positively impacted. Inclusion of children with disabilities starting from early childhood has been shown to correlate with a greater likelihood of adult employment and higher salaries, a significant return for an early investment in these children. By investing in services and trainings, the government can ensure better outcomes for children with disabilities through inclusion with their peers in educational and community environments. Many lawmakers fear the large up-front costs of programs, but in the long run the government will be saving money in sectors such as unemployment, Medicare, Medicaid, and Social Security. The impact of programs that support children with disabilities will last over time which is what makes them so valuable.
Children without disabilities also benefit from inclusion of children with disabilities through greater empathy and better understanding of diversity and no determent to developmental, academic, social, or behavioral progress. When children with disabilities are segregated into separate environments, disability becomes a foreign concept to their peers. By making inclusion the standard, teachers and providers destigmatize what it means to have an impairment. Implementing the visions of this policy lays the groundwork for creating a new culture that accepts disability and celebrates diversity both in the school system and the broader community.
The policy also outlines clear standards and definitions for the meaning of inclusion of children with disabilities. Teachers and service providers should promote inclusion of children with disabilities with their peers without disabilities. The policy expects providers to encourage participation in all activities, both within the classroom and extracurricular social activities. The use of accommodations, modifications, and scaffolding to address the differing individual needs and abilities is another facet of inclusion. The policy equates inclusion with high-quality childcare and education to emphasize that if a school or care program is not requiring inclusion of children with disabilities, then it cannot be high-quality. The policy also places responsibility upon the states to provide their families comprehensive policies that are sensitive to their cultural needs and streamlines their individualized programs to remove unnecessary burdens that disrupt the child’s progress. Additionally, the policy emphasizes the development of a mixed delivery system for this high quality education through partnerships with private early education program and technical assistance (TA) efforts that reach family child care programs as well as center-based programs to have each early education program equipped to adapt to the specific needs and learning styles of each student.
The process of implementing inclusion, however, comes with its challenges. There seems to be a disconnect between the services provided to the family through early intervention and center-based programs such as preschool special services and child care services as many families struggle to maintaining child care. There is also difficulty in the transition between Part C and Part B, section 619 of IDEA. Although logistics proves a major hurdle for inclusion, one of the prominent obstacles is demonstrated through the resistant attitudes of many providers. Teachers have been inclined to use the special education preschool classroom as a first strategy for children with disability when it should instead be the absolute last resort. Teachers are concerned that the presence of the children in a “typical” or standard classroom setting would disrupt the learning of their peers which has not been supported by research. The bottom line—More needs to be done to equip teachers with the skills they need to be able to teach ALL children, including those with disabilities. Much still needs to be done to be able to achieve the goal of inclusion in every classroom nationwide, but policies such as this one go a long way to making that happen.
Kristina Mish (C’19) and Susu Zhao (C’19)
Early Childhood Intervention (ECI) is provided to infants and toddlers with disabilities or delays by states under Part C of the Individuals with Disabilities Education Act (IDEA). IDEA requires that services be provided in natural settings such as homes, child care centers, or community places, such as grocery stores, playgrounds, and parks, to help the child participate in community activities with other children with or without disabilities or delays.
The Georgetown University Certificate in Early Intervention Program (GUCEI) is a 9-month program that trains ECI professionals to implement evidence-based ECI services as required by the IDEA. GUCEI participants complete a team based capstone project to conclude their studies. The projects evaluate policy and procedures related to ECI programs through Strong Start, the DC Infants and Toddlers with Disabilities Program or other critical aspects of evidence-based intervention.
Ten capstone posters completed between 2014 and 2016 that focused on implementation of Part C in DC were analyzed to identify themes that support evidence-based practices. Three themes emerged: Issues related to Families, the components of the Individualized Family Service Plans (IFSP), and the priorities, concerns, and knowledge of Service Providers.
Home Visiting: What does the MIECHV Program do in DC?
ECI is grounded in what is known as family-centered care. Families play a very important role in ECI since they are the child’s first teachers. IDEA requires that service providers support families, helping them to support their child’s development, understand their specific needs, and ensure that the child is “kindergarten ready.” In addition to Strong Start, the Part C program in DC, the DC Department of Health also supports at-risk families through the Maternal, Infant, Early Childhood Home Visiting (MIECHV) Program. The MIECHV program serves pregnant women and families with children between ages 0 and 5.5 The home visiting programs support women and families to raise a child that is physically, socially, and emotionally healthy. The MIECHV home visits are voluntary. DC has chosen to implement three evidence-based home visiting curriculums:
- Healthy Families America (HFA) promotes positive parenting to enhance child health and development and prevent child abuse and neglect for socially at-risk families with children from 0 to 5.
- Parents as Teachers (PAT) provides education and support for parents and families from pregnancy through kindergarten entry.
- Home Instruction for Parents of Preschool Youngsters (HIPPY) helps parents become their child’s first teacher by providing instructions in the home to prepare their preschool aged (3-5) child for school.10
Home visitors and the MIECHV program collaborate with Strong Start regularly. As part of DC’s Early Success Framework all home visitors receive specific training on referring children to Strong Start if suspected of having a developmental delay or disability. Home visitors are often the first support families receive regarding their children thus they often need to communicate and collaborate with community-based programs to make sure intervention goals, strategies, and messages are consistent among all service providers.10
Home visitors are also trained in a variety of screening tools, like the Ages & Stages Questionnaires (ASQ), which is used to screen infants and young children for developmental delays. Based on the age of the child and the results on the ASQ, home visitors will either refer the family to Strong Start (birth to three) or Early Stages (3 to 5).1 Strong Start or Early Stages will determine if the child is delayed and meets eligibility criteria for services and supports. Once the child is referred, the home visitor needs to follow up with family to support them in creating unique service plan based on the needs of the child. 5
Family Satisfaction with Strong Start Services
Based on the information gathered from GUCEI participants, families are generally happy with the services their child and family received through the Strong Start program. After exiting the program, almost all families who responded to an on-line survey indicated that their child and family benefitted from Strong Start services. Almost all families:
- received support when their child transitioned out of Strong Start at age 3,
- were given information about their child’s strengths and needs, and
- were involved in creating an individualized family service plan (IFSP) for their child.
However, families would like to receive more information on community activities so that the children can be better integrated into the community and socialize with children with and without delays and disabilities.6
The Individualized Family Service Plan
An IFSP is a legal document that describes the resources, priorities, and concerns of the family to identify the family’s desired outcomes, which is then used to guide service delivery. It also outlines the services the team has decided will support the family in reaching the outcomes and provides information to enhance the child’s caregivers’ ability to promote the child’s growth. The IFSP also documents which environments the child will receive services in to meet the individual outcomes. Developing an appropriate strength-based IFSP is critical as the IFSP directs service provision.
GUCEI participants analyzed the quality of IFSPs, assessing the quality of the outcomes written as well as the extent to which requirements of the IFSP were met. Findings indicate that all legal requirements are met, services are provided in the natural environment, and there is an emphasis on the child’s strengths rather than weaknesses. However, IFSPs need to:
- become more family-centered
- use less legal and medical terminology
- prioritize the family’s main concerns
- reflect the functional skills in the desired outcomes.2
When the outcomes were explored more in depth, the GUCEI participants found that they may be written in a way that it is difficult to interpret them across providers. This miscommunication affects consistency and supports need for clearly established guidelines on writing outcomes.7
Service Provider Perceptions on the Strong Start Process
Service providers play an integral role in coordinating services for children with delays or disabilities. From the first referral to transition into the Strong Start program, over 40 articles of documentation are required from multiple providers at various times. Keeping track of the timeline facilitates the delivery of effective services for children and families while following state and federal regulations. Additionally, tracking progress and effectiveness of interventions will improve efficiency and transparency.3
Strong Start has adopted coaching as an interaction style. Strong Start service providers are required to coach family members, child care workers, teachers, and other caregivers supporting them to help the child meet the IFSP outcomes.4 It is suggested that service providers receive mentoring on how best to integrate services into the classroom and daily routines. This will provide opportunities for service providers to enable the child to participate most fully in activities with other children. It builds upon the caregiver’s existing skills and knowledge to promote the growth and development of children with disabilities.4
GUCEI Graduates Perception on the Training
The GUCEI program has three clear expectations of their graduates. Each graduate is expected to:
- Assess infants, toddlers and young children in partnership with their families in the context of their communities
- Collaborate to develop a comprehensive Individual Family Service Plan (IFSP)
- Use of evidence-based practices to support participation in activities.8
To meet these goals, the participants learn 16 evidence-based practices. Alumni of the program report utilizing certain skills relating to the development of a comprehensive IFSP. For example, 53% of the respondents identified family concerns, priorities, and resources, 59% communicated with families to discuss routines and provide strategies, 59% built relationships with and involved caregivers and team members, and 53% participated in a team to write functional strengths-based outcomes. Alumni also reported on their use of skills relating to evidence-based strategies to promote participation. 53% of the respondents indicated documenting services provided, 42% consulted with caregivers for reflection and joint planning, and 42% monitored and collected information to determine change over time. However, alumni report that they still struggle implementing skills such as supporting families to participate in the decision-making processes and using the coaching approach with caregivers.8
Since the GUCEI program is designed for professionals with early intervention or early childhood service responsibilities, practitioners and policy makers alike, it seeks to empower students to be competent and confident in their knowledge and abilities. Proposed improvement to the program included more face-to-face on-campus interaction and decreased classroom size for the online sessions.8
Based on the information collected for the GUCEI capstone projects, the ECI program by Strong Start in D.C. would benefit from standardizing documentation so that services are consistent, effective, and adhere to the timeline. Using language that is family-centered and reflect family priorities. A special focus on home visiting and coaching are necessary so that caregiver’s and services providers can give children the opportunity to learn in natural environments with other children.
- Anderson, J., Daugherty, M., & Hagley, D. (2014). Transitioning from Early Intervention: An On-line Learning Module.
- Chimka, J., Curry, C., & Johnson, M. (2014). Quality of Individualized Family Service Plans Created by the District of Columbia, Strong Start Program using the IFSP Rating Scale.
- Coates, A. & Agricola, J. (2014). Documentation: Strong Start, Start to Finish.
- Cobosco, J. (2016). Collaborative Care: Coaching and Early Intervention in Group Settings.
- Davis, E.V. (2016). Ages and Stages: Documented Referrals for DC Maternal, Infant, and Early Childhood Home Visiting Program.
- Jackson, J. & Nealy-Shane, D. (2016). DC Strong Start Participant Perceptions of Child & Family Outcomes.
- Martinez, E., Rogers, K., & Staton, C. (2015). Reliability of the Goal Functionality Scale III.
- Nti-Ampela, A., Brocks, N., & Wise T. (2016). GUCEI Alumni Survey.
- Porter, A., Strickland, J., Rogers S., & Behnke, S. (2016). Early Intervention and Center-Based Services Needs.
- Young, C. & Hougen, S. (2014). Linking Families to Community Resources: A Home Visitor’s Approach.
Kathleen Ryan (SNHS ’18)
Meeting the Needs of Families with Young Children Experiencing and At Risk of Homelessness provides key guidelines regarding the need for comprehensive cooperation among service providers, educators, and community resources to reduce the vulnerabilities experienced by children growing up in and around homelessness. While the policy statement more broadly targets early childhood and housing providers, the recommendations set forth throughout the document carry paramount implications for childcare and primary school teachers. Some major applications of this policy statement include but are not limited to the identification and contextualization of a child’s disability with regards to his/her particular environment, as well as implementing individualized education strategies both inside and outside of the classroom.
The Homes through Community Partnership program indicates that 84% of families experiencing homelessness are female-headed. This is due to a number of factors, including the propensity for family shelters to turn away fathers from entering with their families, both out of precaution and due to histories of domestic violence. In addition, the birth of a new child can greatly affect a parent’s ability to work and provide adequate home care, especially if the child is born to a single low-income mother. The Partnership also indicates that children growing up in poverty without stable housing are at greater risk for experiencing problems related to inadequate prenatal and postnatal care and exposure to dangerous conditions such as inclement weather or violence. In addition, children experiencing or at risk of homelessness are four times more likely to show delayed development, and twice as likely as non-homeless children to have a learning disability.
Children who are born into poverty or homelessness are often born prematurely. Babies born prematurely are at higher risk for physiological, psychological, or neurodevelopmental disabilities. Babies born at full-term are given the advantage of more mature internal systems, but when infants are born prematurely they are at an increased risk of complications such as atypical muscle tone, delayed motor development, feeding problems due to a weaker suck, and breathing issues related to underdeveloped lungs. These complications can lead to developmental delays and disabilities which last throughout childhood and can impact school performance. Children born prematurely often have decreased attention, poorer visual and motor skills, and delayed language acquisition. Early childhood educational providers and elementary school teachers must be aware of the behaviors and skill sets that are typically found in premature children in an effort to mitigate the negative impacts on the child, and to mediate the academic, social, and emotional difficulties that arise. The development and school performance of children born prematurely should be closely monitored to ensure that early intervention and early intervening services and supports are provided.
Meeting the Needs of Families with Young Children Experiencing and At Risk of Homelessness, indicates that supporting families who are homeless must be an integrated, comprehensive system as no single system is sufficient to meet all the needs of all family members and children. Every child’s living situation is different in some respect, whether socio-economic, cultural, or generally environmental. As a result, educators should be aware of the complementary programs and resources they may need to consult or work in conjunction with if a child is showing areas in one or more developmental areas and requires further accommodations or assistance.
One broad recommendation that is particularly applicable to school and childcare teachers is the importance of “aligning and coordinating the design and delivery of services for the whole family.” This is particularly important for educating children with disabilities, in order to identify the child’s specific developmental strengths and weaknesses and discern what extent external risk factors or stressors are having on the child. Additionally it is critical that classroom teachers and childcare providers maintain an open, respectful and on-going relationship with the family.
Moreover, the successful integration of child-centered and family-specific needs in children with disabilities or developmental delays rests heavily on the ability of educators and early childcare providers to communicate and cooperate in providing a comprehensive support network. Services such as Continuums of Care (CoCs) are increasingly crucial. These services work to monitor the health of at-risk mothers and newborns during and after pregnancy, educate young mothers about the programs and resources available to families who are in transitional homes or of low SES, and assist families in accessing he services and supports. In conjunction with a non-restrictive learning environment where teachers can individualize the child’s learning objectives and re-define educational success by how fairly and equally he or she benefits from participating in a classroom environment.
The Policy Statement on Meeting the Needs of Families with Young Children Experiencing and at Risk of Homelessness outlines ways in which various programs, particularly, early childhood providers and CoCs can address a variety of issues. A major issue that families who are homeless confront is the lack of coordinated support systems. In a population with decreased rates of literacy and lower levels of personal advocacy, it is critical that the U.S. puts coordinated systems of care in place. This Policy recommends that early childcare providers conduct more thorough intake procedures, where housing status is taken into account.
Furthermore, the Departments of Health and Human Services (HHS), Housing and Urban Development (HUD), and Education (DOE) suggest referring and connecting families with different program providers rather than simply giving the family the contact information for the supports. It is suggested that perhaps assigning one single family coordinator or programmer who is in charge of integrating program services and support and insuring that services and support reinforce the goals of all. This family coordinator or programmer could then help to establish academic, social, and developmental supports for each child in the family, along with educational, social, and job assistance supports for each adult in the family. One of the main takeaways from the given Policy Statement is that departments, programs, and coordinators must take a holistic approach when it comes to handling and supporting families with young children who are homeless or at risk of becoming homeless. Because each child and parent has different needs individualizing services and supports to the needs of each family member is critical.
Young children, particularly infants and children under the age of five, are at the highest risk of experiencing homelessness. Further, nearly 50 percent of children in shelters “in a given year” are under the age of six (p. 3). Because of this, it is imperative that the United States implements programs that both reduce these statistics and increase support for those facing this reality. Early childhood has proven to be the most critical and sensitive period for developing children, thus, a potential recommendation must address the educational and developmental needs of children under the age of five as well as those entering elementary school. Homeless children are at greater risk of falling behind their peers academically; therefore, the U.S. educational system must take care to provide protections and specific educational programs for young homeless children. One possible avenue that the system could take would be to implement after-school academic programs at shelters for young children to attend after their regular school day. Educational personnel, such as teachers and professional academic tutors, would teach these programs which would help to bolster the children’s academic abilities and maintain a continuity between school and home. The policy statement set forth by the U.S. Department of Health and Human Services (HHS), the U.S. Department of Housing and Urban Development (HUD), and the U.S. Department of Education (ED) recommends two-generational programs that target both the child and their parent(s). Therefore, in the possible after-school program discussed above, there could be a separate educational program for the children’s parents in order to help supports their academic needs and to increase their rates of literacy. Furthermore, the recommendations in this Policy underscore the importance of looking after individuals with disabilities. Without a proper and inclusive education, children with disabilities are at risk of becoming more isolated and falling further behind academically and socially. It is imperative that school systems set programs that enhance the learning environments of all children with disabilities who face homelessness, as education creates a platform to break the cycle of poverty and homelessness.
Alejandra Ruttimann (C’18)
Amanda Webb (C’18)
Sydney is a toddler who lives at home with her parents. She receives daily care from her immediate and extended family members (i.e., grandparents, aunts, and cousins). Sydney has a diagnosis of cerebral palsy and attends her local Early Intervention program. She receives physical and occupational therapy. As she aged, her service providers became concerned with her motor skill development, especially her difficulty in learning to stand and walk. At the age of 18 months, the Individual Family Service Plan (IFSP) team agreed to include assistive technology to promote standing and walking in her home and childcare center. Although Sydney’s family agreed to the use of assistive technology (AT), for some families, AT is a novel concept that takes time to learn, use, and advocate its functional importance across routine based activities.
Family and caregivers of children with disabilities may see multiple barriers that effect the child’s development, compared to typically developing children. Kang et al (2017) discuss the environmental, social, and attitudinal barriers many families and caregivers of children with disabilities report face compared to families and caregivers of children without disabilities. Families identify lack of resources, equipment, training, and inclusivity that hinder their child’s development compared to children without disabilities. Environmental knowledge (i.e., resources, coaching/training, family support, etc.) can help families of children with disabilities to feel included in their community and promote the overall well-being of their child’s development (Kang et al, 2017). AT devices and strategies are crucial components that help caregivers include children in routine-based activities across a variety of environments. Sydney and her family were more easily included in community based activities by using AT.
Many young children and their families depend upon AT resources and services to promote function across routine activities and environments. Children with disabilities or delays use AT to access their environment so they can move, play, and communicate safely and effectively. The Individuals with Disabilities Act (IDEA) defines AT “as any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of a children with a disability (§602(1), 2004).” IDEA (§602(2), 2004) specifically distinguishes AT services from AT devices and defines AT services as “any service that directly assists a child with a disability in the selection; acquisition, or use of an assistive technology device. This definition highlights that for children and families similar to Sydney’s, AT can be a specific device or a service that is provided to train families to use and maintain the device in order to use it across activities and ensuring that the families have many opportunities to implement learned strategies.
The IFSP team meets to discuss the need for including AT devices and services in the plan to accomplish family-centered outcomes. The team, which always includes the family, considers the implications for AT use to facilitate effective child involvement in routine-based activities. Sydney’s family and the rest of the IFSP team discuss multiple factors that can affect the success of using the device. Factors such as the persons who Sydney will be interact with, the activities she will be involved in, the environments in which she will use the device, and what types of technology are available all contribute to the decision making process.
Also, to assist with decision-making there are four questions that the IFSP team should answer: (https://www.teachingei.org/technology/11-consider.php):
1. Have previous interventions, modifications, and strategies not led to the functional results desired by the team;
2. Has there been a change in environment or circumstance;
3. Has the child’s skills or behavior changed;
4. Is there a change in technology (e.g., compatibility issues)?
The Student, Environments, Tasks, and Tools (SETT) framework (Zabala, 2010), is used by the IFSP team to consider all aspects of AT decision-making, helping the team make the most efficient, effective and functional recommendations for the device and services ensuring that the child and family will use the device across environments and by many caregivers. This eight-step decision-making process accounts for the interconnections among the: 1) child, 2) environments, 3) tasks, 4) tools, and the need for 5) ongoing evaluation and modification. Dunst, et al (2013) concluded in his meta-analysis that AT devices “promoted child engagement” in routines (e.g., playing with toys, self-feeding, moving around the home) that may otherwise be very difficult or impossible to achieve. AT devices were shown to positively impact the attainment of outcomes regardless of age, disability, or severity of child’s intellectual delay (Dunst, et. al, 2013). AT devices and strategies that are designed in light of family-centered outcomes promote multiple opportunities for the child to achieve success.
- Collect Child and Family Information
- Examine Natural Environments
- Identify Elements of Key Activities
- Brainstorm AT Solutions
- Create an Implementation Plan
- Modifications + Recommendations
Sydney’s family and service providers collaborate with each other to ensure ease of device use and activity implementation. Unfortunately, studies indicate many families and service providers “abandon” AT devices and strategies after initial implementation.
Common pitfalls an IFSP team must consider to mitigate abandonment of the device include:
1. Limited access to Early Intervention specific AT implementation strategies (i.e., routine-based intervention, least intrusive device/strategy across environments, etc.)
2. Lack of evidence-based practices implemented by service providers and family members when using IFSP defined AT devices and/or services;
3. Limited consideration of ongoing AT device maintenance or strategy modification as the child ages or family circumstances change.
Recent studies have demonstrated the necessary attitudinal shifts of parents and caregivers occur when provided sufficient and effective coaching to implement AT devices and strategies across environments and daily activities. Tamakloe and Agbenyega (2017) concluded that outcomes were achieved when childcare center teachers and staff used AT devices and strategies. Based on a survey that questioned the staff’s interactions with AT, the authors concluded that ‘maintaining positive attitudes’ were paramount for learning, maintaining, and modifying AT device usage of children with disabilities in the classroom. Service providers must provide optimal training and coaching in how to incorporate AT devices in routine based activities. Nelson, et al (2013) reported, based on interviews with teachers about their perceptions of AT use in the classroom, that teachers must know when technology will be beneficial in the classroom, as well as counterproductive to a child’s learning. Both low and high tech devices are appropriate for use by young children in the classroom, home, and community. Children use low-tech device to participate successfully in routine-based activities in the classroom and community.
Sydney’s family and service providers collaborated, coordinated, and executed an IFSP to include AT device(s) and strategies to address the family-centered outcomes. The family received coaching and training on how best to incorporate these devices in their daily activities to support Sydney’s motor skill development. The family and service providers coached and trained Sydney’s childcare center staff to ensure the AT devices and strategies were frequently and effectively included in the classroom’s daily routine. Providing the equipment, resources, and skills can help resolve environmental, social, and attitudinal barriers that would impede Sydney’s overall development.
1. Dunst, C.J., Trivette, C.M., Hamby, D.W. (2013). Systematic review of studies promoting the use of assistive technology devices by young children with disabilities. Research Brief Volume 2, Number 1. Tots-n-Tech Research Institute.
2. Kang, L., Ming-Chieh, H., Liao, H.F., Hwang, A.W. (2017). Environmental Barriers to Participation of Preschool Children with and without Physical Disabilities. International Journal of Environmental Research and Public Health. 14:518. Retrieved from: http://www.mdpi.com/journal.ijerph
3. Nelson, L.H., Poole, B., Munoz, K. (2013). Preschool Teachers’ Perception and Use of Hearing Assistive Technology in Educational Settings. Language, Speech, and Hearing in Schools. 44. pps. 239-251.
4. Sawyer, B., Milbourne, S., Dugan, L., Campbell, P. (2005). Report of assistive technology training for providers and families of children in Early Intervention. Research Brief Volume 2, Number 1. Tots-n-Tech Research Institute.
5. Simpson, L.A., Oh, K. (2013). Using Circle Time Books to Increase Participation in the Morning Circle Routine. Teaching Exceptional Children. 45; 6, pp. 30-36.
6. Tamakloe, D., Agbenyega, J.S. (2017). Exploring preschool teachers’ and support staff’s use an experiences of assistive technology with children with disabilities. Australasian Journal of Early Childhood. 42:2. Retrieved from: http://dx.doi.org/10.23965/AJEC.42.2.04
7. Zabala, J. (2010). The SETT Framework: Straight from the Horse’s Mouth. Retrieved on 2 January 2018 at http://www.joyzabala.com/uploads/CA_Kananaskis__SETT_Horses_Mouth.pdf
Sharice Lane, SLP, M
Early Intervention Diversity Fellow, 2017-2018
Fetal Alcohol Spectrum Disorder in Native American Communities: Inadequate Education and Inaccessible Health Services
Isn’t it unfortunate that there are preventable diseases, disorders, and conditions that still occur? As a nation that claims to value children, it is even more unfortunate that many people do not take plausible precautions when they could prevent later consequences. However, with the scientific and medical advancements that are constantly being discovered and implemented in the U.S., we have established a system that compensates for the lack of prevention with early intervention services. That is, of course, if you are aware of and have resources to access the use of preventative and intervening resources. Fetal Alcohol Syndrome Disorder (FASD) is an example of this issue. FASD is completely preventable. In some areas of the U.S., the number of children identified with FASD has decreased since1973 (Jones and Smith) when the disorder was first identified. However, the Native American community continues to experience a disproportionate number of children with FASD. It is estimated that 29.9 American Indian infants out of every 10, 000 live births have FASD.
FASD is one of the most prevalent disorders that Native Americans face. FASD is a spectrum disorder characterized by structural anomalies and behavioral and neurocognitive disabilities in children resulting from a mother’s alcohol consumption during pregnancy (Beckett, 2011). Members of the Native American community experience high rates of alcoholism, and women tend to drink during their pregnancies and during labor, women use alcohol and drugs to numb their labor pains (Beckett, 2011). This alcohol use may be due to the lack of awareness about the dangers of alcohol consumption during pregnancy to unborn children.
Currently, there are programs specifically designed to educate the Native American community and provide resources for them. With help from the Substance Abuse and Mental Health Services Administration (SAMSHA) and the National Organization on Fetal Alcohol Syndrome (NOFAS), the Navajo Nation FASD Prevention Program, developed a creative and culturally sensitive program that has aided over 40,000 members of their tribe (Beckett, 2011). Unfortunately, because this program is only open to members of Navajo Nation, other Native Americans tribes cannot access it. However, SAMSHA and NOFAS attempt to provide resources throughout the entire Native American population. One innovative program was established by Morgan Fawcett, who is affected by FASD. He travels throughout the U.S. explaining FASD, discussing prevention strategies, and providing services needed for those affected by FASD (Ulen, 2011). Although the efforts taken by these organizations and people yield positive effects, they have not caused long-term change in the communities.
Members of Native American communities are almost two times as likely to have FASD than white Americans not only due to the lack of education, but also because of the lack of appropriate medicine and access to clinics. The inability to seek assistance may play a part in the higher alcohol consumption by the Native American population. The Indian Health Service (IHS) is supposed to provide “federal health services to American Indians and Alaska Natives” (Indian Health Service). However, with their limited number of hospitals, health centers, and health stations, members of the communities cannot access the appropriate treatment or therapy they may need to moderate their alcohol consumption. The hospitals and health stations that members can use to obtain intervention are limited, and they may be located very far from the community. Although the primary goal of the IHS is to provide health care for American Indians, only 20% of community members use the services due to lack of accessibility. For example, a woman from the Assiniboine Tribe on the Fort Belknap Reservation drove over 35 miles to reach the health station, and waited for hours to receive her prescription, only to realize upon her arrival back home that she had been given the wrong medication (King, 2016).
In order to decrease the rate of FASD in Native American communities, the IHS, in addition to the Substance Abuse and Mental Health Services and the National Organization on Fetal Alcohol Syndrome, need to create culturally sensitive programs that can adequately educate people about FASD and provide resources for the Native American communities. To address intervention, the IHS should develop more services and supports closer to reservations or provide free transportation. A key factor in addressing FASD is educating leaders from the communities so they can disseminate the importance of sobriety before and during pregnancy while also explaining what resources are available to families if a child is affected by FASD. These improvements could help to significantly decrease the high rates of FASD in the Native American population in the U.S.
Indian Health Service. (n.d.). Retrieved from https://www.ihs.gov
Jones, K. L. and Smith, D. W. (1973) Recognition of the fetal alcohol syndrome in early infancy. Lancet, 999–1001.
King, J. (2016). Indian Health Service Problems Under Scrutiny by Senate Panel. News Talk KGVO. Retrieved from http://newstalkkgvo.com/indian-health-service-problems-under-scrutiny-by-senate-panel/
Mental Health: Culture, Race, and Ethnicity: A Supplement to Mental Health: A Report of the Surgeon General. (2001). Substance Abuse and Mental Health Services Administration, Ch. 4. Retrieved from http://www.ncbi.nlm.nih.gov/books/NBK44242/.
Ulen, E. N. (2011). Fetal Alcohol Syndrome Rate Higher Among American Indians. Indian Country Today
Media Network. Retrieved from http://indiancountrytodaymedianetwork.com/2011/09/05/fetal-alcohol-syndrome-rate-higher-among-american-indians-48085
Bria Marley (C’17)