PrayForMojo78

No question right now, just a thank you for this AMA. I currently run a group home and have worked with the disabled community in some form since I was 14 and you have provided more valuable information to the public at large in this AMA than most people encounter in a life time. I share your vision for the society your daughter will face in the future and people reading things like this and getting information like you are providing will go a long way towards making that society possible. We have come a long way but people still do not understand cognitive and developmental disabilities and think everyone who has Down's is the same. Thank you for getting info out there and for being a great father/man.

Nurses review the patients on a regular basis and they see a full complement of doctors who review them. You give yourself your own medications when you need pain meds or if you needed a psych med right? And you don't worry about ODing, right? It is the same for caregivers. We give medication and if there are side effects or health problems with consult with doctors or go to the hospital. We do not change dosages or anything, just administer pills. It is not that difficult to train someone to read a prescription and follow it.

First I wanted to say that you are doing it right. I manage a group home and your attitude and outlook and planning is far ahead of many families in similar situations. I also would suggest researching organizations in your area and nationwide that provide care (I am sure you have already but I would be remiss if I did not mention it). At some point the medical or behavioral issues become difficult for families to handle alone and many are ill prepared for that but feel they need to continue to provide care themselves even when it is becoming too difficult for them. When that happens, the child suffers and the family suffers and everyone is miserable. There are other options. The term group home has a lot of negative connotations because of the past and some current poor examples but there are group homes and other supported living situations (supervised apartments, companion models, family supported living models) which offer a range of options. There are some truly great organizations I have worked with (and one I currently work for) that can take the stress of being 24 hr caretakers off of families yet still offer the same levels of support and encouragement and a level of love and compassion. The team at my house treat all of the folks who live in the home like family and make sure they are accomplishing all of the goals they have for themselves and enjoying their lives fully. I am consistently amazed by what my team accomplishes and how happy the folks at our home are. These living situations are not like the medical style facilities of the past. HIPPA prevents me from sharing any personal stories but I want you to know that there are some amazing CCBs and residential providers out there that can support you and your family when that time comes. The most important thing is preparation and getting on the waiver lists EARLY so financial resources never become an issue. The wait lists for services are tragic and people often wait 20 yrs for slots to open up so planning is key. Anyway, just wanted to say good job sir and you're doing it right.