Home care of DD children-Need advice

txredheadnurse, BSN, RN · Feb 27, 2010

I work DD case management nursing for clients in group homes. I am going to assume for this posting that any non DD medical issues have a plan of care already in place justifying 1 to 1 nursing and address the DD aspects of the case.

The reality of DD nursing is pretty simple actually in a group home setting. We are part of an interdisciplinary team because DD is a global issue not a medical/nursing one. The parents will hopefully have accessed their local MR resource/referral center who can help them find a non nursing case manager to provide a link to psychology, social work, adaptive aids, rehab specialists like PT, OT, speech for wheelchair and adaptive aids recommendations, therapy etc. The case manager can help the parents devise training for their child in skills of daily living like toothbrushing, dressing, feeding etc. It takes an ability to break down tasks into simple steps to provide achievable goals for DD clients.

Nursing in a group home is there to triage emergent conditions, ensure appropriate evaluation for chronic conditions is maintained and teach (lots of teaching) about things like seizures, contractures, dysphagia etc and to teach about and monitor closely for undesirable side effects and medication interactions since many of the clients are on multiple drugs for psychiatric issues, seizures etc.

I know I based my response on a group home but I hope you can glean helpful things from it to adapt to a PD setting. I also advise everyone entering this field since you are dealing long term with DD clients to maintain boundaries. I see the most failure when nurses cannot do this and lose their objectivity and/or get burned out from assuming global responsibility for the clients and not allowing the interdisciplinary team to work properly. Being DD is not in and of itself a medical issue. Medicalizing it does the client a disservice in my opinion. Clients with DD have just as many undesirable quirks of character as anyone else and it can be challenging at times to step back and allow them to be who they are without trying to "fix" it all the time. Don't misunderstand I enjoy my clients for the most part but I also see them for who they are...individuals who have some cognitive challenges and unique personalities.

innercitynurse · Mar 2, 2010

That's a good answer. The only thing I would add is that if these kids are at home, the parents are probably overwhelmed. I would refer them to whatever local resource exists for parents of kids with developmental disabilities so that they can meet others in the same/similar situations. They will get ideas on how to deal with issues and will not feel so alone. If they like the internet, there are also good online support groups for various diagnoses. Like the previous poster said, don't take on all their problems- you will get burned out.

Blackcat99 · Mar 2, 2010

Thanks so much both of you. I am sorry it took so long for me to reply. I appreciate your input very much.

rainstorm83 · Jul 18, 2010

Disclaimer... I'm not in your field. I'm a student in an RN program and an aide in long term care.

But I can give you the other side. As a parent, I love when my son's aide give me ideas and techniques that can be useful in teaching him, regardless of whether it's academic, social, or behavioral.

Trying to look at it clinically which is unlikely when it's my family, when people ask me how I am it often leads to exposing our real issues and leads to forming a plan to address it.

Good communication skills are so important, more so than in many other fields. You need the family to follow your instructions while your not there so they need to understand the plan including the reasons behind it and why you think it's best. And you need to understand what will strengthen the family as a unit so that they can help him too. If that is unclear, for example there needs to be things that the family can all do together enjoyably, even if it is limited to small things at first. Otherwise, life is always work with no break. Like every child, this child deserves to be a source of joy.

Also, it's a immeasurably better when there are ways the other siblings can play with the special child or help out, especially if the NT child is younger and doesn't get why his brother doesn't play with him and get's special therapy which looks like fun. The DD child is your number one priority by far but it really cuts down on jealousy if the NT child can be somehow involved in some of the therapy. Less jealousy equals happy kids that will actually play nicely with each other.

I hate it when anyone voices low expectations or speaks negatively about him, especially if it's a professional. I don't mean stating facts. It would be crazy for anyone to expect you to be able to help their if they are never able to address anything. Telling me that my child doesn't talk, ok especially if it comes with advice. Telling me that I shouldn't expect him to go to college one day (and this was when he was just 2) only tells me that you are not going to try and I need to get someone else.

Also, you never know exactly how much a child understands so if you have to address something extremely negative, I suggest trying to do so in a separate room from the child. The reason is even if you are trying to change that fact, hearing it may be damaging to the child's self esteem. He'll improve less if he believes he is stupid or a bad boy, which no child deserves.

I hope this is helpful and not completely stupid.

WI_home_RN · Sep 25, 2010

I work private duty nursing of two DD teenagers and i'm also the parent of one. I think its important as the RN on the case to be sure you're on the same page with the parents as far as their wishes and how they want things to be handled. Good communication, open communication is also very important. If you have any feedback for the parents as well, share it and talk about it. I know parents always appreciate the feedback.