The outcome study
Now that you have decided to use the system of care as
a resource for your family, we would like to invite you to
participate in the outcome study.

When you participate in the study, you will be helping guide
local, state, and national agencies on how to better serve youth
with severe emotional disabilities, and their families.

Your system of care services will not be affected in any way if
you choose not to participate in the outcome study.

Your participation in the outcome study is
important because:

• You are the experts on your family and the system.
• You are giving your expert knowledge to help the way
  children are served locally, statewide, and nationally.

As a participant in the outcome study:

• You, and possibly your child, will be interviewed twice
  a year for three years.
• You will be interviewed at a time and setting that is
  convenient to you and your family.
• Your outcome study is completely confidential.
• You will receive monetary compensation for your time.
• You can choose to discontinue participation at any time.

You will be asked questions about:

• Behavioral problems
• Functioning
• Education
  
• Behavioral and emotional strengths
• Family life situation
• Living situation
• Satisfaction with services

All of this information is confidential.
Personally identifiable information will not be shared.
Download the SAGE Flyer (PDF)

Families and Service Providers

Youth & Family FAQ's

Is the study confidential?
The outcome study is completely confidential. If you choose to participate a random number will be assigned to your information and no names will be tied to the data we receive. Only the outcome study staff will have access to individual answers (even a judge can not force us to share your information). Information collected from families will be reported as group data, no individual or identifying information will be used. Service providers and caregivers will not have access to information provided by the youth.

There are circumstances under which information provided may not be confidential if harm to a child, self or others is suspected; it will be reported to the proper authority. If child abuse or neglect is suspected it is required by law that it be reported, as written under Wyoming State Statute Title 14-3-205. Any person who knows or has reasonable cause to believe or suspect that a child has been abused or neglected or who observes any child being subjected to conditions or circumstances that would reasonably result in abuse or neglect shall immediately report it to the child protective agency or local law enforcement agency or cause a report to be made.
 
How do I know my rights and welfare are protected when I participate?
The description of the outcome study have been submitted as a proposal and approved by the Institutional Review Board (IRB) of the University of Wyoming and the Wyoming Department of Health.

The purpose of an IRB review is to assure, both in advance and by periodic review, that appropriate steps are taken to protect the rights and welfare of humans participating as subjects in a research study. To accomplish this purpose, IRBs review research protocols and related materials (e.g., informed consent documents and investigator brochures) to ensure protection of the rights and welfare of human subjects of research. The chief objectives of every IRB review are to assess the scientific merit of the research and its methods, to promote fully informed and voluntary participation by prospective subjects who are themselves capable of making such choices (or, if that is not possible, informed permission given by a suitable proxy) and to maximize the safety of subjects once they are enrolled in the project.

How much time will it take?
Caregiver interviews will take between 1 ½ hours and 2 hours. Youth interviews will take about an hour. We will contact families every 6 months to conduct an interview for up to three years.

How will my family and/or child be compensated for our time?
We know your time is valuable and to acknowledge that we will provide you with compensation for your time. Caregivers participating would receive $50 for the initial interview, $25 for each subsequent interview, and $100 for your final interview for a total of $250. If your child is 11 years old or older, they’d like to ask him/her some questions in a separate interview. That interview will take about an hour, and your child will also receive a gift certificate for every interview completed. Your child would receive $10 at each interview for a total of $60.

When do you do the interviews?
We know that families have busy lives. If families cannot meet us on a weekday, we can set up an evening or weekend interview.

Where do you do the interviews?
We want to make participation in the outcome study easy for families. We plan to conduct most outcome study interviews in the homes of participants. If a participant would like to meet somewhere else, we can help find a private room in a local school, library, or other facility close to their home or work.

What happens to the outcome study information?
The outcome study team will send information to the national outcome study team. Each child has a unique number, but only the outcome study Team can link the number to child, the nation outcome study team can not. The national team will use national data to provide periodic reports to CMHS and SAMHSA to justify funding request to Congress. They will also use the data to produce presentations and reports for CMHS audiences including the advisory body to the national outcome study, present findings at conferences, and publish finding in journal, reports, and books.

The outcome study team will also use the data to compile reports for state and local level reporting that includes what your community needs and is achieving. It will provide feedback to service providers and families, monitor quality of services delivered, inform decision making, and guide service delivery practices.

Data will be stored by the outcome study team for one year after the grant ends in 2010. Data with the national outcome study might be stored for a longer period of time; however, there is no way for them to identify who that data came from.

Why is it important to have families participate in the outcome study?
Assessing improvement for children and families provides evidence for the effectiveness of systems of care in your community and for the whole program. It’s important to know how children and families change because of the services they receive. It’s important to know if the system of care philosophy works. Knowing that families and children see the system of care services as valuable helps everyone know that the program has an important place in our communities and nation. When you participate in the outcome study you are helping to make changes for children in the future and some immediate changes that might benefit you and your family.

How will I know when it is time to for my next interview?
Using information you provided during your initial interview, the outcome study Team will send you a letter approximately one month before your next scheduled interview. The letter will ask you to contact the outcome study staff to schedule an interview, or if it is agreed upon the OCS staff may pre-set the date and time and ask for your confirmation. If the OCS person does not hear back from you they may try contacting you by telephone a few weeks before the interview is due. You will be filling out a locator form, so the outcome study staff will not make attempts to contact you in any way you do not feel comfortable with.

What if I want to stop participating?
Although the information youth and families provide is very important, we understand that families have busy lives and unexpected things happen that might make it necessary for you to discontinue your participation in the outcome study. If at anytime you wish to no longer participate please let your evaluator know so we can discontinue contacting efforts.

See all Frequently Asked Questions

Family Care Coordinators

Forms (care coordinators need to print these forms and then send them to the outcomes study staff-evaluators)

1. Albany CountyOutcome Screen Intake Form (DOC)

2. Teton County Outcome Screen Intake Form (DOC)
3. Phase V EDIF (PDF)
4. Consent Form (DOC)

Family Care Coordinator FAQ's

How long do I have to turn in the EDIF?
outcome study team needs the EDIF within thirty days of your first meeting with a family. We also need to complete a baseline interview with them in the same thirty days if they are going to participate in the outcome study. The sooner we get a baseline interview done the more useful the data will be that we provide your community. So as soon as possible after your first meeting with a family get the EDIF to the OCS staff.

What if the Diagnosis is deferred?
We can still put this on an EDIF form, but the child will be ineligible for the longitudinal outcome study because of the 30 day window we are given to complete baseline interviews to collect data.

Can we use V codes?
No, we can use DSM-IV codes and ICD-9 codes, but this does not include v-codes for a diagnosis.

Where can I get information for the EDIF?
This information can come from any administrative form you have access to, you can ask the caregiver themselves, some answers may be found on the your intake form, and some information can be filled in by the outcome study staff if you can not find the information and the family is going to participate in the longitudinal outcome study. The EDIF is the only form that can be modified after turning it in to the national database, but please find as much of this information as possible upon intake.

If a child does not qualify for the outcome study can they still be enrolled in the SOC?
Absolutely! The requirements of a diagnosis of SED, impaired functioning, multi-agency involvement, age range, and the presence of this disability for a year or more are requirements of the outcome study, but not necessarily of the system of care (SAGE). The requirements for enrollment into the system of care will depend on the specific community and it is possible that a child will not fit into both.

What if a child’s sibling is enrolled in the outcome study?
Only one child per family may be enrolled in the longitudinal outcome study. We are aware that families may have more than one child enrolled in the system of care (SAGE) the decision as to which child will participate in the outcome study, if eligible, will be left to the family.

See all Frequently Asked Questions