All participants

By profession

pdf 
  2 

By Job status

Years of service

By professional role

By all participants

pdf 
  2 

By profession

pdf 
  2 

By job status

By years of service

By professional role

By all participants

pdf 
  2 

By EI/ECSE Professionals

pdf 
  2 

By All Participants

# A tibble: 16 × 5
# Groups:   position, response [4]
   position                response information                    count percent
   <chr>                   <chr>    <chr>                          <int>   <dbl>
 1 EI/ECSE Personnel       No       "Adequate information\n is gi…    27      33
 2 EI/ECSE Personnel       No       "Detailed list\nis needed ?"       7       9
 3 EI/ECSE Personnel       No       "Detailed list\n would be hel…     5       6
 4 EI/ECSE Personnel       No       "Detailed list during\n Covid…    13      16
 5 EI/ECSE Personnel       Yes      "Adequate information\n is gi…    21      26
 6 EI/ECSE Personnel       Yes      "Detailed list\nis needed ?"      41      51
 7 EI/ECSE Personnel       Yes      "Detailed list\n would be hel…    43      53
 8 EI/ECSE Personnel       Yes      "Detailed list during\n Covid…    35      43
 9 Healthcare Practitioner No       "Adequate information\n is gi…    26      32
10 Healthcare Practitioner No       "Detailed list\nis needed ?"       4       5
11 Healthcare Practitioner No       "Detailed list\n would be hel…     3       4
12 Healthcare Practitioner No       "Detailed list during\n Covid…     4       5
13 Healthcare Practitioner Yes      "Adequate information\n is gi…     7       9
14 Healthcare Practitioner Yes      "Detailed list\nis needed ?"      29      36
15 Healthcare Practitioner Yes      "Detailed list\n would be hel…    30      37
16 Healthcare Practitioner Yes      "Detailed list during\n Covid…    29      36

By Profession

pdf 
  2 

Theme 1: Medical Conditions List

Theme 2: In-Practice

Theme 3: During Covid-19 Pandemic

Theme 4: Recommendations

Research Question1:

To what extent are EI professionals aware of the categories of medical conditions that are listed in the Oregon State Plan policy guidance? (AWARENESS)

Overall analysis showed that 74% are aware of the medical conditions listed in the Oregon State Plan Policy guidance, 72% are aware of the medical documents and reports that constitute written documentation of eligibility, 68% know that there are medical conditions that may not be presently adversely affecting child’s development, and 56% are aware that there are medical conditions eligible for Part C services but may not be listed in the policy guidance. When results were analyzed by profession, significant differences were found in the awareness of healthcare and EI/ECSE professionals where 21% of healthcare professionals are aware and 19% are not aware of the medical conditions list. Among healthcare professionals, 18% are aware and 22% are not aware of the written documentation of Part C eligibility, 19% are aware and 22% are not aware that there are medical conditions that may not be presently affecting the child’s development, and only 13% are aware and 27% are not aware that there are medical conditions that may be eligible for Part C services but are not listed in the policy documents. No significant differences were found based on job status (full-time vs part-time), years of service, and professional role, however, a lower number of professionals (27% vs 31%) with less than 15 years of experience reported to be aware of medical conditions that may be eligible for EI/ECSE services but not listed. Analysis based on professional role indicated that 24% of professionals whose role is to make referrals or provide medical diagnosis are aware of the medical conditions that may be eligible for services but not listed whereas 30% reported being unaware. Cronbach’s alpha score of 0.73 indicates higher internal consistencies among 4 items with binary response in the survey that were asked to explore the awareness level.

Qualitative analysis aligns with the survey response where respondents indicated that they learned about the diagnosed medical conditions that have a high probability of developmental delay, through their educational training or on-the-job. The majority of respondents (90%) said they have not seen the Oregon list of medical conditions before. EI professionals reported that programs have their own list of medical conditions. Lastly, healthcare professionals reported limited understanding of the purpose of the medical conditions list and a lack of understanding in who the list is for!

Research Question 2:

How are the categories of medical conditions that are listed in the Oregon State Plan policy guidance are understood and used by professionals in EI eligibility evaluations and assessments for birth to 5-year-old-children in Oregon? (IN PRACTICE)

Results were analyzed based on the overall response, profession, job status, years of service, and professional role. Consistent results were found across all groups indicating limited use of medical conditions list due to the lack of information. Overall analysis indicates that 77% of professionals ask for information on medical conditions from colleague to decide on EI referrals and eligibility evaluation, 58% have experienced a delay in EI eligibility evaluation due to lack of information, 57% have experienced a delay in timely receipt of EI services for children with diagnosed medical conditions, and 53% have looked for more information on medical conditions for EI eligibility determination. Sixty-eight percent reported that they have not skipped EI eligibility evaluation for children with diagnosed medical conditions that have a high probability of developmental delay.

Qualitative analysis provided similar insights where healthcare professionals reproted inconsistency in providing physician statement. They also reported limited understanding on how having a medical diagnosis and physician statement help the child, family, and the EI evaluation team. EI agencies have collated their own list of medical conditions in alignment with the state list, which may lead to county-to-county variation in the referral and evaluation process.

Research Question 3:

How and to what extent are EI eligibility evaluation and assessments for children with diagnosed medical conditions impacted during the covid-19 restrictions? (During COVID-19)

During the COVID-19 pandemic, 94% professionals reported to provide services remotely, 62% experienced delay in EI eligiblity determination for children with diagnosed medical conditions, and 48% have experienced decrease in number of children accessing healthcare and part C EI/ECSE services. A set of questions were asked only from EI/ECSE professionals to explore the state of uptake of EI/ECSE serivces during the pandemic where 77% reported to follow the 45-day timeline to do EI eligibility evaluation, assessments and IFSP development. Forty percent EI/ECSE professionals are using only tools that can be administered by parents during the COVID-19 pandemic and 30% reported to meet children and families in-person or in home visits.

Only 23% EI/ECSE professionals have reported to skip EI eligibility evaluation for children referred with written documentation of eligibility, and 9% reported to enroll children with interim IFSP where EI eligibility evaluation was not possible for children with diagnosed medical conditions during the COVID-19 pandemic. Low percentage of professionals reporting to skip EI eligibility evaluation and enrolling children with interim IFSP indicate lack of awareness or information among EI/ECSE professionals of federal regulations on children referred with diagnoed medical conditions that have a high probability of developmental delay or disability.

The qualitative analysis confirmed the above findings. As an urgent response to covid-19 pandemic, the EI/ECSE and healthcare professionals shifted to online platform for evaluations, assessments and other services. Specifically, professionals indicated that virtual platform is not suitable for delivering services to young children to carry out evaluations and assessments. In addition, virtual platform has put more burden on families to carry out observations with no technical expertise and lack of suitable materials. Some professionals also discussed that having a well-written medical conditions list and awareness among professionals would have benefitted some families who had to go through the eligibility determination process where they could have by-passed it during the covid-19 pandemic. Results also indicated that number of referrals were severely reduced due to the covid-19 pandemic.

Research Question 4:

What changes do EI professionals in Oregon recommend in the level of information provided about the categories of medical conditions that are likely to result in developmental delay? (VIEWS)

The analysis resulted in a consistent response from EI/ECSE and healthcare professionals in terms of changes they would prefer in medical conditions listed in the Oregon State Plan Policy guidance. Ninety percent reported having a more detailed and comprehensive list would help to decide when EI eligibility evaluations can be skipped and direct referrals are made for EI assessments and 86% percent agreed that a more detailed and comprehensive list of diagnosed medical conditions is needed in Oregon. Seventy-nine percent said a detailed and comprehensive list would have been helpful during the COVID-19 pandemic. Sixty-five percent said adequate information is not provided in the list of medical conditions that make children eligible for Part C EI/ECSE services in Oregon.

During the semi-structured interviews, we investigated views of participants on the current list and if they would like to suggest any changes. Respondents appreciated that there is a list of medical conditions in Oregon, however they greatly agreed in their replies that the current list is not seen by them and they do not refer it. The three most agreed recommendations are to have a more comprehensive, detailed list, widely circulated and presented in relevant forums on a regular basis and it should be embeded within the current system such as in the universal referral form and in the evaluation packet in EI programs to promote its appropriate utilization and increased understanding among professionals and families.

Suggestion1

Problem: According to professionals people may think if condition is not on the list, it is not eligible becasue list contains limited information..

Statement:

“I suppose the trouble with A list is that there’s always those outlying diagnoses where, ’oh, it’s not on the list so it doesn’t fit. A list of specific conditions would be nice but with the caveat of it being like this isn’t necessarily an all-inclusive list.”- Speech and Language Pathologist

“I think more information would always be better. A lot of times we will reference this and if the condition is on there then you know it’s a lot easier for us to bring the child in but I mean there’s a lot of times where we have conditions that aren’t on this list and so then we kind of have to go and do our own research. So if we find research that points to the child having a condition or there’s been research studies that show that for the potential of developmental delay then we cite that kind of documentation and use that to bring them in if it’s not on this list.”- Physical Therapist

“One conditions was cleft lip and palate. So I actually don’t know if that’s on the list but if it’s not, certainly it should, because it has a huge developmental impact, even with mild cases.” – Speech and Language Pathologist

Recommendation:

Having more detailed, comprehensive list in simple language with more conditions that are almost 100% of the time eligible will be helpful. However, It would be helpful to have disclaimer that the list is not an all-inclusive list and that for more information a reliable web resource on medical conditions need to be provided.

Suggestion2

Problem: Lack of clarity in the purpose and utilization of the list? Is it for medical professionals, families or Early Interventional professionals?.

Statement:

“I think it’s very important for medical professionals to be sharing this with us, the teachers who should be looking out for these things and maybe even checking in with the parents and asking them if they have concerns.”- EI/ECSE professional.

“I would just send the referral and trust the EC cares would figure out if it’s inappropriate.”- Pediatrician

Recommendation:

Need more streamlined, clear presentation of information in simple langauge with instruction on how list can be utlized and implemented.

Suggestion3

Problem: Respondents varied greatly in their replies to making the list accessible for families.

Statement:

“I would love a list that I can share with a parent that they can understand without me needing to translate it alot. May be something in more layman’s terms.” (EI/ECSE professional)

“It’s certainly a very involved document and you need some sense of background to understand a lot of it but I think it’s important to be transparent with parents about this. I would think if any child might fall into any of these things a bit near, they should be provided to parents after birth or at the point which pediatricians or Health Providers are evaluating and assessing children and helping so this should be shared.” – (EI/ECSE professional)

“I don’t know how many parents would prefer this. I don’t know if it’s in super family-friendly language.” – EI/ECSE professional

“I don’t know if they had families look through it and given feedback I think that would be a good place to start.” -Physical Therapist

“It is always great to have information available for families that is appropriate and relevant and in family-friendly language. However, just the idea that the process of a physician statement is so different from a standard referral so most of the time when somebody referred for a physician or a med statement because of his medical condition. The doctor is saying here’s a program that will help you because we know things will go wrong. So it’s an active referral for developmental delay versus passive referral for a physician statement. So I don’t know if families would access it really all that much because they are already in the program by the time they would need it.” EI/ECSE specialist

Recommendation:

Parent groups should be consulted as part of the decision making process to get their feedback on how useful list would be for families.

Suggestion4

Problem: Current list is not accessible/visible/widely circulated. Only 10% interviewees had seen the Oregon list of medical conditions before the interview. Professionals were aware that children can be automatically eligible for EI services based on certain medical conditions, however, majority of participants (90%) have not seen the list before or referred in their professional role.

Statement:

“I’ve had a lot of presentations by EI folks and it’s never been presented to me so maybe when they go out to do presentations… they often go around to practices to talk about their services, maybe that should be part of what they talk about.” – Pediatrician

“ I don’t think any parents have ever seen anything like this. I don’t think parents really understand. A lot of parents don’t even understand what we are, what we do.” – EI/ECSE professional

“Having more people know about it. You know it’s surprising to me having worked in the field of early intervention for 22 years and I’ve never seen an actual list and if this is from the state of Oregon it seems like with all the paperwork that I do get and all the training that I do get it would be easy to be like…. Hey, here is a sheet of paper you should be aware of.”

Recommendation:

1. List should be easily available electronically and widely distributed across pediatric centers and early intervention agencies in Oregon.

2. An electronic list with a link for medical resource for more information should be provided.

3. List can be published on popular websites such as Oregon Pediatric Society and Family Practice Society so that healthcare professionals do not miss this.

4. List should be included in relevant presentations and forums regularly in Oregon.

Suggestion5

Problem: Current list is not embedded in the systems and practices in Oregon.

Statement:

“But they don’t list any on the referral form, they give examples like that they have autism but there is not the entire list there and it doesn’t refer to a list. So it could even just say look at this website, if you want to see the list of what we are asking for,“ – Pediatrician

“We have many children who are referred in, may be 18 months old or 2 or 3 or 3.5 years and we go ahead and then we start this standardized evaluation eligibility process. Never have I been cued to before I start to say bring this out and review something like this with the parent to make sure that the child doesn’t fit into one of these categories. We don’t ask the parent, especially during covid-19, we could by-pass the standardized evaluations.”- EI/ECSE specialist

Recommendation:

1. List can be made available like a reference list on the universal referral form as an additional sheet. An online version can include pop up connected to the list of medical conditions would potentially open up the opportunity for medical professionals to understand and utilize it better.

2. List can be included in the evaluation packet in EI/ECSE programs with an instruction to review these conditions before your proceed with a standardized evaluation.

3. List should be included in orientation and induction of new recruits in healthcare and early intervention programs.