Developmentally disabled nursing

  1. I am an RN who works with developmentally disabled children and adults in a respite care facility. I have found almost zilch out there on the net about working with DD individuals though I have quickly discovered that it is a specialty within itself. How about y'all? In your particular field have you ever been called to work with a DD person? How did you react? What did you do to help that person body and soul? I'm interested in finding out if there would be a call for a DD internet site for nurses. What about it?
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  2. Poll: Have you worked with a developmentally disabled patient while working?

    • yes

      95.00% 19
    • no

      5.00% 1
    • unsure of what DD means

      0% 0
    20 Votes
  3. 14 Comments

  4. by   Jen911
    I worked at the University of Iowa Hospital Schools for Center for Disabilities and Development about 10 years ago. I was only a nursing assistant back then, but learned a great deal. They specialize in the Disabled population, and are a wealth of knowledge. You might try contacting someone there, they might be willing to share some information with you.
    Their website: http://www.medicine.uiowa.edu/uhs/index.cfm
  5. by   nur20
    I work with quite a few developmental delayed/disabled patients. It takes a patient and knowledgable person to work with them. They seem to sense what is in the heart of the person working with them.They respond well to gentleness and kindness.I have accompanied the children to school and therapy. Keeping them stimulated plays a great part.Classical music is good as well as some tv and lots of talking or reading to them. Always watch their reaction to find out what their favorites are. Here is a website that might help............... http://www.devdelay.org/..... http://www.nncc.org/Diversity/spec.delays.html
    Last edit by nur20 on Jan 3, '02
  6. by   hoolahan
    There is a site for nurses in this specialty....

    Developmental Disability Nurses Association

    I work with adults, but as a supervisor for home health aides to assist them with person care in independent living situations. All I can say is that most of the people I work with do NOT see themselves as sick, and they prefer to be called "consumers" of healthcare, DON'T call them patients!! The pople I work with are not newly disabled, and they do know what works for them, if only people will listen!!

    ! That is what frustrates them the most I think, is healthcare providers who do not LISTEN to their suggestions. Very hard for them to acknowledge as they age, increasing dependence, even more so than you see in many "normal" seniors.

    A lot of psych issues, and occassionally behavior problems, as most of these "kids" have been raised by parents who may not have realized it was best to treat them as noramlly as possible, to set rules and limits on behaviors, which really can escalate when they are adults on their own. I am not criticizing parents in this situation, I truly believe they are doing the best they can.
  7. by   semstr
    We've got special trainingprograms here, where you can become a nursing specialist for disabled (in what was ever) people.

    btw, that is what my daughter (she is almost 14) wants to do when she finishes school.
    In the school where she is now, there are a lot of disabled children, it is a pilotprogram, and I guess, no I know, that this program worked really well for the disabled (these kids go from wheelchair to trisomy 21 and other mental underdeveloped children) and the not disabled.

    Take care, Renee
  8. by   DAB
    Thanks for replies so far. I am aware of DDNA and will be joining soon. For those interested, there will be a DDNA convention in St. Louis this coming May. Personally I plan to be there.

    Houlihan, I call the people I work with my clients. The majority need maintenance meds and/or special techniques/procedures to help them maintain their lives to the best capacity. While most of those I deal with are severely or profoundly disabled, I do believe that whatever they can do they should be allowed to do. Even if it seems little, for them it is a big job.

    I am also aware of the disability specialty in the UK. I'd love to hear more from disability specialists there about what they do and what we (I) could learn from these nurses.

    The reason for starting this thread was to find what interest there was in DD nursing. So those of you that have read this far, would you look at a DD site on the internet that looked at nursing from this particular perspective. Keep reading and responding, I'd love to learn from y'all your particular experiences as well as the questions you have about nursing those with developmental disabilities.
  9. by   hoolahan
    Hi Dab, didn't realize what yur point was.

    Yes, I would be interested in learning more. All the info I have found has come from individual searches, and looking at organization sites, such as CP foundation (links on my home computer, not on laptop, sorry) MS association, etc... It would be nice to have a site that links all the other sites a person would need. A really comprehensive listing.

    As for working with my consumers....well, it has not been very rewarding for me. For the most part, they lead busy lives, and just want me to do my supervision visit and get out. I can appreciate that of course, just used to enjoy skilled home health nursing much better. If I wasn't still seeing pt's at my other job for skilled needs, I think I would go start raving mad from the boredom, of this particular poisition that is. Sorry, but that is the truth. I think my consumers may be more physically disabled and a little higher functioning cognitively than yours. My consumers all live in one independent living facility. It is a grouping of 28 condos, so you have to be able to make choices and decisions in order to live there. Maybe that is the difference.
  10. by   DAB
    I can understand that! I came from an insanely busy hospital floor and the difference between the pace is 1000%. However, dealing with what I encounter presently at times is just as challenging if not more. The main challenge is communication and attempting to make my clients understand that while not everything I have to do is pleasant makes me want to both cry and laugh at the same time. That is the reason I too have been looking for an internet site to help guide, counsel, and learn from.

    One thing that is very fulfilling is building relationships, the trust factor we learned about in our psych nursing courses. It took me 6 weeks to finally get one of my patients to smile. Now she jokes with me and the other night she was feeling down and she came to me to cry. I honestly use psych nursing skills as well as neuro knowledge, basic pediatric nursing skills, general medical knowledge concerning all the parts of DD nursing, basic nursing interventions for health maintenance and illness prevention. This so far is a jack of all trades position and I not only love my career, I love the people I work with.

    People always say something like it takes a special person to work with DD individuals. I don't know about that but I do know that the people I work with require understanding and not feeling sorry for them. They don't feel sorry for themselves most of them want to be as "normal" as the rest of the world (if that can be considered normal!). The staff I work with is great!! They look past the wheelchairs, the physical and mental features, the spasticity, the seizures, the behaviors and after awhile you can hear in someone's yelling their own partcular song or in someone's eyes' you can almost see what they're trying to say.

    Of course you do have the times when if you don't laugh you'll cry. At one supper when one client has initiated a a food fight, after I removed her from the room and talked with her concerning her behavior, I walked back into a mess. We decided that thrown chicken and rolls should be an Olympic event.

    Anyway, what do the rest of you think? What would you like to see on an nursing internet site concerning DD? A listing of various DD's, theory, practice, links, family concerns, What do you think?
  11. by   JenMarie
    Hi. I have always wanted to work with DD kids but here in NZ I have found that there are little opportunities to work in this area as an RN. Unfortunately many of the people who work in DD areas are nurse aids and occaisionally ENs (similar to LPN role). I think that it is more a budget thing for places not to employ RNs. However I am also not prepared to work for less money since I am an RN.

    The closest that I currently come to working with DD kids is working on a paeds ward and severely disabled children sometimes come in for a while for respite care. As an earlier post stated it is best to treat them as normal as possible. I get so many rewards from working with this group.

    Is it a similar scenario in thee USA with not amny RNs being emplyed in that area due to the financial factor? I would be interested to know.
  12. by   DAB
    Hey Jen,

    Yesterday I wrote a perfectly lovely reply and I don't know what happened to it but it didn't get on this thread. Regardless . . .

    There are DD positions available in the states but you have to look for them. I rather stumbled onto my position first as an aide, then I went to school for my BSN, nursed in the hospital as a neuro nurse then in CV before coming going back to DD but this time as an RN. I consider what I do as a combination of community/skilled nursing with a lot of neuro thrown in. I really do enjoy what I do so if you want to pursue it, I'd encourage you to search around with local rehab hospitals, clinics, ped's offices, and community organizations that work with the disabled.

    I'd also encourage you to not forget about adult DD clients. Kids grow up and these adults while more limited that what the world calls normal, still deserve good, loving care. It sounds like you'd be one to provide that.
  13. by   magellin1
    I have been working with both children and adults with multiple disabilities for almost five years. There is not a lot of literature out there. I'ts a shame because this is a specialty. Working with this population is a joy for me. The hardest part is often just trying to get them the specialty services that they need. Is there anyone who works with this population?
  14. by   lisamct
    Hi, Im in the UK and trained as a Registered Nurse for Mental Handicap (i.e. learning disability, DD). As DAB said it is a nursing speciality here, we train for the same length of time as our general RN's and RMN's (psych nurses).
    At present I work in a residential resource centre for adults with LD's. RMNH's work within a variety of areas within the NHS both residential and community as well as within the private sector. One sector that there is debate about at the moment is childrens services. At present most child services are managed and staffed by social services staff, most (but not all) of who have no formal training in learning disabilities, which is a bit strange!
    Anyway if anyone wants more info I'd be happy to help, RNMH's tend to be a bit of an unknown entity as we dont exist as a speciality in many areas so Id be glad to pass on any information that I can.
    Lisa
  15. by   magellin1
    At the facility that I am at, the children's program is pretty intense. It is a multidisciplinary, holistic approach. The team decides on the treatment for each child. Ages range from 5 to 21 years old in the pediatric residential program. In the outpatient setting children receive services as young as 3 years old. Many of the children have rare syndromes and there is very limited literature on them. Do your social workers coordinate all aspects of care? Many of our kids have severe disabilities. Our services include: 24 hour nursing, PT, OT, Hippotherapy, Speech, Music therapy, a school program and medical services. We encourage the families to participate in the development of the plan of care.

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