FAST - Adult Transition Program Exit Survey

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* 1. We appreciate your participation in the FAST Adult Transition Program. The future of an individual with Angelman Syndrome can be uncertain, and we at FAST hope to have provided information that can be used as a starting point to assist in making the transition a little more manageable. Your input on the services you received will help FAST further tailor this program to support other AS families. We have 10 survey questions for you, and we sincerely appreciate your input and participation.

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. Which of the following area(s) of your child entering adulthood was 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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* 5. Which of the following area(s) of your child entering adulthood was the Adult Transition Consultant NOT able to help you with and you feel you still need assistance? 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

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

A great deal

A lot

A moderate amount

A little

Not at all

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* 7. FAST is excited to support to our families during this transition period and hopeful that these services meet all or most of your needs for your child's transition to adulthood. While this is our goal, we would appreciate your candid response on how well the Adult Transition services met your needs and the next few questions will address this.

After your Adult Transition services ended, did you need further consultant services?

Yes; we attained a self-paid consultant to further support the Adult Transition needs for our child.

Yes; we needed more Adult Transition consultant support but were unable to afford this option.

No; our needs were met and we did not need further Adult Transition services to support this transition.

Other (please specify)

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* 8. Which Adult Transition consultant assisted your family?

JuliAnne DelMonego

Tracy Carreola

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* 9. Please share your assessment of the services you received from the FAST Adult Transition consultant?

	Not helpful at all	Somewhat helpful	Helpful	Very helpful
The consultant was timely and responsive to reaching out to meeting my family	The consultant was timely and responsive to reaching out to meeting my family Not helpful at all	The consultant was timely and responsive to reaching out to meeting my family Somewhat helpful	The consultant was timely and responsive to reaching out to meeting my family Helpful	The consultant was timely and responsive to reaching out to meeting my family Very helpful
The information packet was helpful and relevant to my child's needs	The information packet was helpful and relevant to my child's needs Not helpful at all	The information packet was helpful and relevant to my child's needs Somewhat helpful	The information packet was helpful and relevant to my child's needs Helpful	The information packet was helpful and relevant to my child's needs Very helpful
The consultant was timely and responsive in preparing me for federal deadline requirements	The consultant was timely and responsive in preparing me for federal deadline requirements Not helpful at all	The consultant was timely and responsive in preparing me for federal deadline requirements Somewhat helpful	The consultant was timely and responsive in preparing me for federal deadline requirements Helpful	The consultant was timely and responsive in preparing me for federal deadline requirements Very helpful
The consultant made me feel confident to navigate the Adult Transition process	The consultant made me feel confident to navigate the Adult Transition process Not helpful at all	The consultant made me feel confident to navigate the Adult Transition process Somewhat helpful	The consultant made me feel confident to navigate the Adult Transition process Helpful	The consultant made me feel confident to navigate the Adult Transition process Very helpful
The consultant was competent and addressed our needs	The consultant was competent and addressed our needs Not helpful at all	The consultant was competent and addressed our needs Somewhat helpful	The consultant was competent and addressed our needs Helpful	The consultant was competent and addressed our needs Very helpful
This Adult Transition program is...	This Adult Transition program is... Not helpful at all	This Adult Transition program is... Somewhat helpful	This Adult Transition program is... Helpful	This Adult Transition program is... Very helpful

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* 10. Do you have any other constructive feedback that you feel would be helpful to share with FAST and/or the Adult Transition consultant that will help further develop this program?