Hi lost and all.
I have a niece with Down Syndrome.
I've been working with adults with developmental disabilities for 11 years in group homes and independent living. I started my own business 5 years ago. My clients live in their own apartments and they are so happy. I have clients who are very low functioning, some with high behaviors, some who are married and some with children. California law says that adults with developmental disabilities can choose to live in a home of their choice and they get to receive the services that enable them to do that. That means they can live in their own apartment with 24 hour care if needed. I think other state laws are similar. They usually have to live with a roommate because they can't afford an apartment here on their own.
There are many programs available and it's worth looking into in your state.
This is the satisfaction survey I send out to my clients every year. If they are lacking in any area we help them achieve their goals. I think the questions are good for any of our family members to help us help them.
LIFESTYLE
Do you have enough access to the community (e.g. stores, parks, buses, and places to go for fun)?
Do you have problems with transportation?
Are there things you would like to do or do more of?
Do you have a job or are you going to school?
Do you need any special supports to get out in the community? to go to school? to do your job?
If you have special supports or equipment, are they in good repair?
Are there special holidays and events you would like to celebrate?
If you have a special Religious preference, are you able to practice it?
Are you comfortable in your home or apartment? Did you choose the furniture? decorations?
Do you feel that you can live here as long as you want?
Do you have people in your life that can speak your language?
RELATIONSHIPS
Do you have friends and caring relationship?
Do you have opportunities to meet with people where you live? Where you work?
Do you have someone with whom you can share your thoughts and feelings?
Do you have someone to talk to about sexuality or family life?
Do you have a phone available to contact others?
Do you need any special equipment to use the phone?
Do you have transportation available when you want to visit or go somewhere with family or friends?
Are you dating someone or could you if you wanted to?
Do you have privacy when spending time with family or friends?
CHIOCE
When you have free time do you get to try new things? If not, why don’t you?
Do you make choices for yourself? If not, who makes choices for you?
Did you choose where you live?
Did you choose where to work?
Do you choose your friends?
Do you choose how you spend your money?
Have there been times when you made choices and didn’t get what you wanted?
Are you receiving the support services that you chose?
Did you help work on your Individual Service Plan?
Are you happy with our services? If not, why?
Are you happy with your support staff? If not, why?
RIGHTS
Has someone told you about your rights?
Do you know what to do if someone violates your rights?
Do you have privacy in your home?
Do you have help with your money?
Do you spend your money the way you want to?
Have you ever-needed help and couldn’t get it?
Do you ever feel like you need help speaking up for yourself with family, friends, or your service providers?
Are you having any problems with Social Security benefits, medi-cal or IHSS services?
Is there anyone taking away your rights?
If so, do you have someone to help you solve the problem?
Is anyone taking or borrowing your money?
HEALTH AND WELL-BEING
Do you feel safe in your neighborhood? In not, why not?
Do you know what to do if you don’t feel safe?
Do you believe that you can protect yourself in the community?
Have you had training on safety and security?
Do you know what to do in case of a fire or earthquake?
Do you know what to do if you are injured or sick?
Do you know how to call for help in an emergency?
Do you have a regular doctor and dentist that you see?
If you are taking medication do you know why you are taking them?
Do you know about any side effects?
Do you have any problems getting medical help when you need it?
Do you have transportation to your doctor or dentist?
Do you exercise regularly?
Do you eat a healthy diet?
SATISFACTION
Are there some things that you want to do that you are still working on: like learning something new: saving money to do something special?
Do you feel that you are being given opportunities to learn and advance?
Do you have confidence in the people helping you?
Are there any areas of you like that you feel you don’t have the services and supports you need? Where you live, work, and in the community?
Do you believe that you are in charge of your life? If not, who is?
Are you happy with your life? If not, are there any changes you would like to make?
Are there other things that we haven’t talked about in your life that we haven’t mentioned?
Did someone help you answer these questions?