Statement of the problem:

 

Scope:

 

1.  What is the incidence or prevalence of the target issue in your community?

 

There is a severe lack of qualified early intervention services for children with disabilities, so much so, that the one qualified provider has a wait list that extends up to ten years.Public schools are incapable of providing acceptable services and local daycares are even less capable and, in many cases, unwilling to provide quality care to children with disabilities.Poor wages result in a high turnover rate and a less than desirable level of training for staff at the one quality provider.

 

2.  Who is affected by the problem (including age, sex, race/ethnicity, economic situation, educational or reading level, place of work and residence)? What are the risk and protective factors for those affected?

 

All families with a child with disabilities are affected, but an especially high percentage of these families are low income.The community is not racially or ethnically diverse, and early intervention services are currently provided from birth to 18 years of age, after which the quality of adult services available is even more deplorable.The low income of many of the affected families is a serious risk factor and some of the children served have a history of early trauma.Protective factors include a few quality service providers, including one early intervention provider and multiple quality speech and occupational service providers.

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3.  What is the impact of the target issue in your community? What are the effects on individuals and the larger community?

 

The one quality early intervention service provider is overworked and perpetually treading water, often unable to focus service on individuals with the most extreme needs.Schools feel burdened and teachers unqualified to handle the individual needs of many of these children.Parents are left with few options, especially those on the wait list, as other providers are worse than incompetent, they are, in some cases, abusive and, in most cases, ineffective.

 

4.  How and by whom is the problem already being addressed? For example, is the local health department focusing on child abuse or neglect? Is there a local affiliate of a national organization that focuses on maternal depression?

 

The state just passed legislation increasing the funding for agencies that provide services to children with disabilities, which will hopefully go a long ways toward reducing staff turnover, providing more stability and consistency of services.However, it will do little to prevent other, less scrupulous agencies, from simply pocketing the extra funds without increasing the quality of their services.Audits are currently every two to three years, but do little to ensure compliance in between, and quality standards are not sufficiently high.

 

5.  What happens to a caregiver who needs treatment for mental health or substance abuse problems, or for trauma that he or she might have experienced? Where can he or she get treatment? What kind of treatment? How do community mental health centers respond? Does the typical protocol include questions about parenting issues or how well children are doing?

 

There are the typical services available and the Department of Health and Welfare oversees the placement of children in cases where the parent is unable, either temporarily or permanently, to provide acceptable care.Health and Welfare relies on the public to inform on cases of abuse and neglect, and every opportunity is provided for the caregiver to receive the necessary help.

 

Community Awareness:

 

6.  Has there ever been a public awareness campaign focusing on your issue of concern? What was the impact? Did the campaign include attention to low-income communities? Were there culturally and linguistically responsive efforts?

 

To my knowledge there has never been any kind of public awareness campaign locally.  It took many years of advocacy by quality service providers around the state to finally get a budget increase approved, but how these funds are spent will be up to each provider, within state guidelines.Even if services are drastically improved and expanded at this one agency, that will do little to alleviate the larger problem.Public schools will also benefit by the increase in funding, but without a collaborative community effort, the allocation of resources will likely fall far short of acceptable.

 

 

Description of the Program and/or Intervention:

 

There is a growing body of research pointing towards the importance of early intervention, especially for children of low SES, where there is an increased risk of developmental delay.  Science is demonstrating the detrimental and lasting effects of prolonged and persistent early stress, as well as the negative consequences of low quality, custodial childcare, while highlighting the importance of creating high quality, stimulating environments for children to grow and learn.  There is a clear need for providing supportive, educational, and intervening services to at-risk families.

 

The National Scientific Council on the Developing Child (2010) released a working paper on the impact environment has on gene expression, especially in young children.  Early experiences affect the epiginome, essentially the “software” which determines how genetic “hardware” is expressed, by turning gene expression on or off.  Early, persistent, toxic stress can have an enduring, damaging affect on the physical and neurological systems that are responsible for managing adversity throughout life, increasing the potential for future health problems, as well as the likelihood of juvenile delinquency and later incarceration.  By contrast, positive, supportive, and stimulating early experiences can activate genetic potential, increasing social-emotional stability, reducing the likelihood of future mental health and stress related disorders, and increasing the potential for future academic and economic success.

 

The Center on the Developing Child at Harvard University (2016) published a paper connecting the emerging science behind child development to the need for reform within child welfare systems.  The paper emphasizes the detrimental long term effects of toxic stress on the developing brain, especially in the early years when thousands of new neural connections are being formed every second.  Resiliency, however, can be built up through the establishment of positive, protective relationships, both in and out of the home.  Where home is the primary source of stress, and especially in foster care environments, there is an extreme need to mitigate the impact of early traumatic experiences, with positive, supportive environments.  The paper identifies three key components to promoting healthy development for children into adulthood: reduce external stress, build strong, responsive relationships, and support the learning of foundational life skills.

 

Betty Hart and Todd R. Risley (2003), in their paper, “The Early Catastrophe: The 30 Million Word Gap by Age 3,” identify a shocking difference in vocabulary development in children of low versus high SES, where children in the upper income bracket have been exposed to 30 million more words by the age of three than children born to lower income parents with lower levels of education.  Hart and Risley (2003) also demonstrate that cumulative vocabulary at age three predicts performance on language receptivity and development tests by third grade.  In other words, the gap continues to grow.

 

Fernald, Marchman, and Weisleder (2013) published the results of another study demonstrating the learning gap across income levels in their paper, “SES differences in language processing skill and vocabulary are evident at 18 months.”  Fernald et al (2013) discuss the lack of prior research focusing on the reasons why socioeconomic status seems to have such a significant impact on early learning and development and their study, which involved research with twins, determined that environment, not genetics had a more significant influence on learning and language development, even in families of higher SES.  With language and vocabulary development by preschool age predicting later academic success, it is increasingly difficult to ignore the importance of early intervention, especially for families of lower SES, in order to prevent unnecessary developmental delays.

 

Treatment Issues:

 

1.  If you are addressing treatment issues, what are the barriers to accessing treatment for those affected?

 

The biggest barrier to accessing treatment is a lack of meaningful collaboration between schools, families, and community organizations.Children needing services spend the majority of their days either at home or at school.Those fortunate enough to receive qualified intervention services are still only spending a very small percentage of their day and their week participating in those services.Without continued support at home and at school, the impact of those intervention services will always be limited.Those children unable, due to a lack of providers, to access quality intervention services, rely entirely on school services to provide support, yet much of public school services are provided by unqualified individuals, such as aides and paraprofessional with only a high school degree requirement, while student to teacher (or aide/para) ratios are unacceptable, especially with the lack of training provided.The result is often custodial care, rather than education.

 

2.  What approach or combination of approaches can best engage caregivers to participate in your program, initiative, or treatment effort?

 

This is an area where action research could prove highly beneficial, as there are many like-minded individuals within both the community and the schools, but failure is occurring on a system level.Being able to demonstrate clearly the benefits of a mutual effort may be the key towards bringing systems together that are currently operating in isolation to the detriment of all.Supporting parent advocacy will also be important, as parents provide a link between schools and community services and their voices, when voiced properly, are more likely to be heard.

 

3.  Are there home-visiting programs in the community that identify caregivers struggling with mental health or substance abuse problems, or the impact of trauma? Are there home-visiting programs that identify babies and toddlers who may need infant mental health services? Do mental health agencies provide backup support or consultation?

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I am not aware of home-visiting programs, except where negligence has already been identified, and then these visits are more punitive than supportive, and they certainly aren’t preventative.Support services have to be solicited, yet those in need are less likely to solicit help without support.This is where schools and community agencies need to be involved in identifying families and individuals in need of support and helping to guide them towards services available.This can only happen when a trusting relationship exists between schools and families, or community organizations and families.The latter usually exists, but the former often does not.

 

4.  What kind of routine maternal screening is available through healthcare providers’ offices when a baby is born? Does this screening include questions on maternal depression and anxiety, substance abuse, and domestic violence?

 

Services are available through programs such as WIC, as well as private provider services, including questions of maternal depression and anxiety, substance abuse, and domestic violence.Participation is voluntary unless a Health and Welfare issue is clearly identified and this type of participation, as well as follow-up depends on trusting relationships being established between a variety of service providers, including schools and early childcare facilities.

 

5.  What happens if screening results indicate that a caregiver is being challenged by one of these issues? Do healthcare providers have information about a referral network?

 

Healthcare providers have referral options, but in the case of developmental disabilities, qualified services are overly limited, so referrals don’t necessarily result in immediate services being received, or less than qualified services become the only option, outside of relying on public schools and child care facilities or Head Start programs.

 

6.  Is attention given to fathers, grandparents, and other caregivers who may also be struggling with these concerns?

 

Again, there is not a sufficient network for identifying, proactively, where struggles exists.Outside of early screening during pre and immediate postnatal care, it is the responsibility of families to seek help, unless extreme cases of neglect or abuse are reported with sufficient frequency.Preventative support, and especially identification of the need for such support is lacking.Public schools and early childcare providers are where this support and identification needs to come from, but the quality of care from those providers is typically low, as qualifications for employment, as well as reimbursement for employment is very low.Even where qualifications are relatively substantial, reimbursement in the form of wage or salary, is often very low compared to other career fields, or even nearby states.

 

7.  Are there disparities in access depending upon income or insurance status? In other words, do healthcare providers see only those who can pay?

 

There are healthcare programs and supports for low-income families and, in the case of intervention services, access is relatively equal for families, regardless of income, at least when space is available, otherwise families with higher income may have greater success finding quality services through other means, including the ability to travel greater distances, to neighboring states, where services may be available, or by accessing private education opportunities where more qualified services may be available.

 

8.  What other organizations have similar goals and might be willing to work on this problem? What types of partnerships would help achieve the objectives?

 

There is only one agency in this community the provides high quality intervention services to children with developmental disabilities, but there are others that provide related specialized services, such as speech, occupational, and physical therapy.There are organizations that support family welfare in general, including those that cater to low-income families.There are government programs that support family services.The most influential partnership would involve public schools and that will likely be the most difficult to establish, but without it success will always be limited.

 

9.  What are the possible treatments?

 

The treatment is developing a community network aimed at providing comprehensive services to all children with disabilities, where wait lists are no longer necessary, because qualified services can be received through the school system, as well as childcare facilities, leaving the most severe interventions for specialized providers with highly specialized skills and resources.This will require a training network and a willingness to collaborate and share resources.

 

10.  What kind of treatments and services are already available?

 

Treatments and services are currently being provided by agencies acting largely in isolation, or with small groups of agencies collaborating out of mutual self-interest, but there is currently no community wide effort to improve service options and provide services that truly leave no child behind.There are a lot of gaps in service, causing a lot of children and families to lose their futures.

 

11.  Do support groups for individuals and families exist?

 

I know of at least one Facebook-based support group in the local community for families who have children struggling through the challenges of developmental disability.  This group provides a network connecting families in a supportive way to share their experiences, good and bad, providing hope to many in crisis.

 

12.  What kind of family-focused treatment exists for families with young children? Is help through local health agencies available to children whose parents are challenged by mental health, substance abuse, or trauma? Through childcare? Through religious organizations? Through other settings?

 

There are a number of family-focused organizations that provide different kinds of support services to families struggling with issues related to poverty, homelessness, health and welfare, trauma, and disability.Some of these are religious organizations, while others are private agencies.

 

 

Prevention:

 

13.  What are the possible preventive measures, solutions, or remedies?

 

Early, high quality intervention is the number one measure that can be taken to increase the success potential for children with developmental disabilities.  The earlier intervention begins, the better the results tend to be.  Early detection becomes a key concern, which is difficult when early childcare providers are not equipped to recognize the signs of developmental delay or in trained in how to communicate those concerns to parents in a way that encourages receptiveness.  A training and support network for early childhood care providers would be highly beneficial in increasing the potential for early detection as well as the ability of all providers to provide supportive and educational care at all stages of development.

 

 

14.  Are other prevention programs being planned or implemented by other organizations?

 

None that I currently know of.

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Outcome Map:

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