FAST - Adult Transition Program Intake Survey

Question Title

* 1. Dear parent and/or family member,

Thank you for contacting the Foundation for Angelman Syndrome Therapeutics. FAST is a nonprofit organization founded by parents and dedicated to improving the lives of individuals living with Angelman syndrome. We are here to assist you understand the steps necessary to take as your child becomes an adult. Your consultant will address your concerns and support you with understanding the process of your child turning 18 or having turned 18 within the last two years.

We have eight survey questions for you, and we sincerely appreciate your input and participation. You are not alone in this process! FAST is here to encourage and support you as you navigate the process and learn about your critical role as a parent of an adult individual with Angelman syndrome.

Sincerely,
The Foundation for Angelman Syndrome Therapeutics

As we begin the survey, FAST would like to know some general information about your family supported by our Adult Transition Program.

Parent / Guardian Name(s)

Child's Name

Best Contact Number

Email Address

Address

City

State

Zip

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* 2. What is the age of your child?

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* 3. What is the genotype of your child with Angelman Syndrome?

UBE3A deletion

UBE3A mutation

UPD (paternal uniparental disomy)

UBE3A imprinting

Clinical diagnosis

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* 4. Overall, how prepared do you feel as the parent/caregiver to navigate the resources and options as your child transitions to adulthood before visiting with our Adult Transition Consultant?

A great deal

A lot

A moderate amount

A little

Not at all

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* 5. Which of the following area(s) of your child entering adulthood would you like the Adult Transition Consultant able to help you with? Please check all that apply.

State Developmental Disability Agencies that administer the Medicaid Home and Community Based Waiver, commonly called the MedWaiver

Guardianship/Conservatorship/Power of Attorney

Applying for Supplemental Security Income (SSI) and opening a bank account for your adult child’s SSI money

Cap on amount that can be in savings

Vocational Rehabilitation

I.D. card

Food stamps

Achieving a Better Life Experience (ABLE) Act of 2014-similar to a 529 education plan but allows families with individuals with disabilities to save and the earnings on an ABLE account are not taxed. The funds are generally not considered for SSI programs

Special Needs Trust

Transition from pediatric to adult medical care, including transition to state Adult Medicaid as services may change

Other (please specify all additional concerns)

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* 6. FAST is excited to support to our families during this transition period. If FAST were not offering this service, how else might you have met this need?

I/We would have contacted a local consultant/attorney and paid privately.

I/We would have reached out to other local parents for support.

I/We are confident in our ability to navigate the Adult Transition process by ourselves.

I/We do not have the resources above to assist us and would be uncomfortable in the Adult Transition process without this assistance from FAST.

Other (please specify)

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* 7. Do you have any other comments, questions, or concerns that you feel would be helpful to share with FAST and/or the Adult Transition Consultant that will help with your child's transition to adulthood?

Specifically list what you hope to accomplish with the assistance of an Adult Transition Consultant.

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* 8. By submitting this intake form and requesting the assistance of a FAST Adult Transitioning Liaison, you understand and agree to the following (you must agree to all of the following [as indicated by checking each box below]):

Liaison will provide general information on programs; however, the information will not be specific to your individual state or county.

Your child has Angelman syndrome.

Your child with Angelman syndrome is between the ages of 16-20

It is expressly understood that any FAST Adult Transitioning Liaison working with FAST is not a practicing attorney and does not provide legal advice or legal services.

FAST and anyone working with FAST or representing FAST cannot and does not guarantee any specific outcome. The family agrees to hold FAST harmless.

The family agrees to hold the FAST Adult Transitioning Liaison harmless.

Agrees to complete a short survey at the conclusion of participation in the Adult Transitioning Program.

This contract serves as a waiver of confidentiality regarding your child’s information that you choose to disclose.

You are consenting to sharing your information with FAST board members, volunteers, FAST independent contractors and employees. Information will only be shared amongst the above mentioned parties as needed.

You are agreeing to be contacted.

The information and links provided are for general informational purposes only. Any Adult Transitioning Liaison working with FAST is not a practicing attorney and does not provide legal advice or legal services. FAST and anyone working with FAST or representing FAST cannot and does not guarantee any specific outcome. All information and links are provided in good faith; however, by providing links and information to other sites, FAST does not guarantee, approve or endorse the information or products available on those sites.