Your Special Needs Adult Sibling's Life and Needs for the Future:
What to Record



Your special needs adult sibling will depend on you in their future. It is essential that you understand and record the smallest details of their daily life. You'll need it in case of an emergency with your aging parents. You'll need it as part of the plan for their life and future.

Talk to your parents now so that you are not left without critical information after a crisis. Here is a list of questions and conversations so that you and your family are prepared for the well-being of your sister or brother. Record these conversations on paper or a computer file. Don't assume that you'll remember. You may not be the only one that needs to access the information. Organize it, make a backup and let others in the family know how they can access the information if needed.


Questions About Life and Care for Your Special Needs Adult

PERSONAL IDENTIFICATION

First make sure you record the basics about your sister or brother. Full name, birthdate, birthplace, Social Security number. Include favorite nicknames. Address. Phone numbers. Your special needs adult may not be able to communicate any of these things for him or herself.

GUARDIANSHIP INFORMATION

List names, addresses, phone numbers, emails of any Guardian, Trustee, Special Advocates, or Case workers for your special needs adult.

Questions for care of your special needs adult sibling

DETAILS OF DAILY LIVING

1. Daily Routines

  • Include a typical draft schedule for the day including times

  • Go back and specify how each task is accomplished, if they need help, what kind of help, how long it takes to complete

  • Regular chores or tasks to complete (any help needed)

  • Regular religious observances or prayers

  • Religious services attended? Where? How often?

    Transportation? Who else goes along? Special entrance or seating issues? Name and address and phone number of clergy or religious leader


    2. Work Place or Education

  • Do they also have your emergency contact information on file?

  • Where do they go each day? Names, addresses and phone numbers

  • How do they get there? Names and phone numbers

  • What is the back up if the transportation system does not work?

  • Program at school for special needs adults

  • Teachers, what they are working on

  • Supervisors and typical tasks performed

  • Evaluation periods or conferences attended by others

  • Meals at school or work: how provided, who decides menu, who pays and how


    3. Respite Care Alternatives

  • Names, phone numbers, locations

  • Do they have your emergency contact information on file?

  • How many times can you use it? Duration?

  • Required notice?

  • Packing instructions

  • Payment arrangements


    4. Current Doctors or Therapists

  • Specialty, Name, address, phone number

  • Do they specialize in working with special needs adults?

  • How often is the visit?

  • Special instructions for contacting the doctor

  • Special instructions for you during visit?

  • Special instructions for the doctor during the visit?

  • Health Insurance or payment method

  • Who is the Power of Attorney for Health Care?


    5. Medical History

  • Who is their Health Care Power of Attorney? [According to federal law, only that person has access to the information below.]

  • Surgeries, hospitalizations, significant incidents and date for all

  • Medication history (What has been used in the past? What was discontinued and why?)

  • Where are the official medical records for your special needs adult?


    6. Medications Current

  • Type, for what condition

  • Dosage, Frequency, prescribed by whom. Where purchased.

  • Special instructions for taking the medications

  • Insurance coverage or payment method


    7. Favorite Pastimes

  • at home, favorite TV shows, music, games, hobbies, etc.

  • Times and duration

  • Special instructions for each

  • Anything NOT to permit?


    8. Entertainment Preferences

  • Movies, ballgames, concerts

  • Maximum duration of outing

  • Crowd issues or limits?

  • Special seating or entrance issues?

  • Antyhing NOT to permit or attempt?


    9. Clothing Needs

  • Clothing items preferred

  • Special colors or fabrics

  • Sizes for each item

  • Preferred stores or brands

  • Any custom requirements

  • Who selects, how often

  • Special Instructions for shopping or trying on


    10. Food Preferences and Dietary Needs

  • any food allergies or dietary restrictions

  • favorite foods (Where are the recipes?)

  • Favorits restaurants and order preferences

  • Ideal food quantity per meal

  • Encourage any special eating program

  • Special issues with feeding or utensils

  • Favorite drinks (or restrictions)

  • Alcohol permitted? What? How much?

  • Special drinking issues (cup, straw,quantity)


    11. Behavioral Issues

  • What are the challenges, and what do you do to calm him or her?

  • At Home

  • At School or work

  • In public places

  • Restaurants, Shopping Malls, Grocery Stores


    12. Special Fears of your special needs adult

  • What are the challenges, and what do you do to calm him or her?

  • Heights?

  • Elevators or escalators?

  • Loud Noises?

  • Thunderstorms?

  • Fearful objects (balloons, dogs...)?


    13. Holidays and Celebrations

  • What holidays are typically celebrated?

  • What religious holidays are usually celebrated?

  • Any special foods or traditions that are expected?

  • Any favorite holiday recipes?

  • Any special presents associated with each day?

  • How have birthdays been observed? Food? Present? Party?


    14. Travel Issues

  • Vacation choices and issues

  • Relative visits or Family Reunions expected

  • Special Travel needs, preferences or restrictions

  • Special instructions when making reservations

  • Seating Preferences or needs

  • Special instructions to drivers, pilots, conductors

  • Special Packing list or instructions

  • Special instructions or advice to other passengers

  • Special ID's required


    15. List of Relatives (in town and out of town)

  • Full names, what name your sister calls them, addresses, phone numbers and email addresses

  • Special connections or regular communications

  • Any regular outings or exchanges with relatives


    16. List of Friends

  • Full names, what name your sister calls them, addresses, phone numbers and email addresses

  • Special connections or regular communications

  • Any regular outings or exchanges with relatives


    17. Financial Arrangements

  • Any income sources, when, how much?

  • Bank accounts or trusts in their name

  • Regular expenses

  • Misc. Spending or allowance

  • Who manages his or her money?

  • Who pays the bills for your special needs adult?

  • Who arranges or approves new transactions?

  • Who manages health insurance coverage and payments?

  • Who holds Power of Attorney?


    18. Location of Legal Documents and Records

  • Birth certificate

  • Baptismal record or document of religious membership

  • Social Security card

  • Bank Accounts or Financial Documents

  • Property titles or deeds or trusts

  • Special ID cards

  • Certificates or ID cards for special programs

  • Health Insurance records and billings


    19. End of Life preparations

  • Burial location or plot

  • Funeral preferences

  • Special clothing or religious garments needed

  • Religious Institution

  • Clergy or religious leader

  • Payment plans or arrangements


    20. Anything we forgot?



    Resources

    Other information should be gathered for your special needs sibling or child of any age. The best book that I have ever seen was written by two lawyers who specialize in working with special needs families to plan for the future.




    Intro to Special Needs Adults: Talk to Aging Parents About Their Future

    From Special Needs Adult to talk early talk often with aging parents Home Page

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