Why Are People with Mental Retardation Still In Nursing Homes?

[Traveling_Home]

Why Are People with "MR/DD Status"Still In Nursing Homes?
Information Bulletin # 279 (3/09)

There are 57, 673 people in nursing facilities who have an "MR/DD status -
MR/DD with no organic condition" and their "MR/DD status were manifested
before age 22 and are likely to continue indefinitely." This information
was reported to CMS from each nursing facility. See Minimum Data Set,
Table AB10F as of 12/31/08. http://www.cms.hhs.gov/MDSPubQIandResRep/ and
click on MDS Active Resident Information Report

Under the federal Medicaid statute, all of the 57,673 people must have a
"plan of care," which must be "revised ... after each assessment," and
each assessment "must be conducted ... no less often than once every 12
months."

This assessment must also be "based on" the MDS. Each nursing home must
"certify as to the accuracy" of the assessment. This "plan of care"
requires that the nursing facility provide services "to attain or maintain
the highest practicable physical, mental, and psychosocial well-being of
each resident...."

Some of the 57,673 people probably have another diagnosis, in addition to
the above "MR/DD status," which could qualify them for nursing facility
level of care, despite the "MR/DD status." For those who do not qualify,
however, they are statutorily supposed to be discharged from the nursing
facility.

The important point is that whether or not a person with the above "MR/DD
status" "requires nursing facility services" (because they have another
diagnosis) or does not require nursing facility services, your State must
ensure that they receive the appropriate "specialized services for mental
retardation" - the same services that they would be entitled to receive
outside a nursing facility.

Here are the two handles: if the people "qualify for nursing facility
level of care," then your State must ensure that the specialized services
are being provided while they reside in the nursing facility. If they do
not qualify for a nursing facility, they are supposed to be discharged to
an appropriate community-based program where they can receive the
"specialized" services.

We have not heard of any State that complies with the above. We do not
believe that the 57,673 people are receiving "specialized" services of any
sort, let alone "to attain or maintain their highest practical ...
well-being."

What are advocates and their lawyers doing to ensure that these
requirements are being enforced?

Advocates can obtain information about each person by name, nursing
facility, address and should be advocating for them to receive these
services.

The good news is that State-by-State, the numbers are manageable. Yes, if
your State wanted or if the advocates addressed the issue, it's a solvable
problem.

Steve Gold, The Disability Odyssey continues

Back issues of other Information Bulletins are available online at
http://www.stevegoldada.com
with a searchable Archive at this site divided into different subjects.
To contact Steve Gold directly, write to [e-mail]
or call 215-627-7100.


Minimum Data Set, Table AB10F (12/31/08)

Alabama 1,420
Alaska 21
Arizona 283
Arkansas 1,095
California 3,734
Colorado 503
Connecticut 1,082
Delaware 190
District of Columbia 70
Florida 2,047
Georgia 1,990
Hawaii 125
Idaho 154
Illinois 2,699
Indiana 1,962
Iowa 1,153
Kansas 752
Kentucky 1,234
Louisiana 1,267
Maine 192
Maryland 879
Massachusetts 1,464
Michigan 1,295
Minnesota 772
Mississippi 730
Missouri 2,091
Montana 456
Nebraska 604
Nevada 197
New Hampshire 202
New Jersey 2,445
New Mexico 160
New York 3,742
North Carolina 1,918
North Dakota 248
Ohio 3,390
Oklahoma 1,056
Oregon 349
Pennsylvania 3,003
Puerto Rico 29
Rhode Island 175
South Carolina 626
South Dakota 244
Tennessee 1,280
Texas 4,285
Utah 286
Vermont 77
Virginia 1,512
Washington 819
West Virginia 590
Wisconsin 708
Wyoming 67

NATIONAL TOTAL 57,673


--
Steve Gold, The Disability Odyssey continues

Back issues of other Information Bulletins are available online at
http://www.stevegoldada.com

[masuki bance]

1. Thanks for the info

This truly has been a teachable moment.

[eShirl]

2. "We have not heard of any State that complies with the above." Have they looked, asked? n/t

[JohnnyLib2]

9. Yes.

It's a "watchdog" group.

[Junkdrawer]

3. About 10 yrs. ago, they tried to put my MR brother in a nursing home...

Fortunately, my best fried was and is a strong advocate with ARC.

It took one hell of a fight, but he's in a good group home now.

[PA Democrat]

30. I'm happy for your brother. I was on the board of our local chapter of the Arc

and I can't say enough good about their efforts to find housing arrangements in the community for adults with MR and other disabilities. Our Arc operates a number of group homes and they are very well run, and staffed by some really good people.

What regularly made me angry though, was that they we were always scrambling for more funding to open more group homes because of the significants number of people on waiting lists. It broke my heart to meet parents in their 70s and 80s who were desperate to make sure their child was in a good group home before they became too old to care for them or died.

[supernova]

4. The family is unable to care for them

a lot of the time.

Mostly you have to have someone around during the day to make sure they don't do something harmful, (like leave a gas stove eye turned on.) Or hurt themselves through having a temper tantrum if they are volatile. Most families cannot afford to have anyone staying at home anymore. It's simply too costly for the family. So, you spend down your resources, get the disabled family member on public assistance and they are cared for.

I think I heard Oregon (?) is paying family members a stipend to stay home with ill relatives... you have take classes in care giving for your situation so that the state-federal regulations for standard of care are met. Caring for your relative officially becomes your job. I think it's a great step up.

[rox63]

5. I imagine part of it is how functional they are

If an MR/DD adult can't feed themselves, has to wear diapers, needs 7x24 supervision, then they probably need institutional care. But most MR/DD people don't fit that description. Many of them can function in the community in a group setting, if they get the right intervention and training at an early age.

[patrice]

13. The key is precisely how the efficacy of the services is defined and accountability for same.

[liberal N proud]

6. Another Reagan legacy

One which we live with still today...



When homelessness first became a national issue, however, the Reagan administration all but turned a blind eye to the problem. Federal expenditures for low-cost housing plunged during Reagan's watch from $32 billion in 1981 to just $7 billion in 1987.

At the same time, funding was slashed for a variety of social services, including public health, drug rehab and food stamps -- programs that were relied upon by the thousands of mentally ill people who'd been released from state facilities as a cost-cutting move.

Reagan was asked in a 1988 interview, shortly before Christmas, what he thought of the homeless people sleeping just across the street from the White House in Lafayette Park.

"There are always going to be people," he replied. "They make it their own choice for staying out there."

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2004/06/09/BUGBI72U8Q1.DTL

[jwirr]

23. You are wrong on this one. RR had nothing to do with the developmentally

disabled being in the community. WE the parents worked our asses off forcing communities to develop community based services for our children so we could keep them home or at least in the community. I was a social worker in the first Minnesota county to have all of its clients out of the institutions and back home in the community. It was my greatest achievement. RR dumped the mentally disabled out of mental institutions and he is to blame for much of their homelessness.

[JohnnyLib2]

7. Thanks for the reference.

Rec.

[Hepburn]

8. When I was a youngster in the1950s, persons who were mentally challenged...

...were hidden away. A rest home was actually a step up from having them kept inside in the attic or the basement.

[jwirr]

24. You are so correct there. But today most communities have services

that relate totally to the needs of this group.

[Hepburn]

26. True...

...or should I say somewhat true. With the current national financial crisis, so many services are being cut. And, of course, hardest hit are usually the groups that can least protect themselves, one of which is the mentally handicapped.

[jwirr]

27. Institutions are usually more expensive than community based services

so hopefully they are safer. Either way my daughter will come home before an institution.

[Hepburn]

29. I hear ya....

...and I hope things go well for you with this. :hug:

[patrice]

34. New community based services are smaller and more neighborhood oriented and supported

by means of volunteers and employees.

They will be community full-spectrum-of-life education. Clinics, nursing centers, Day Care and Elder Care. Kind of like the Mennonites do, but in the cities and suburbs.

[patrice]

10. The key, of course, is the services, or, more precisely, the efficacy of the services.

Nursing homes could be preventing some of these people from being exploited in the same way that "the unborn" have been exploited politically almost SOLELY to create certain kinds of jobs and feather some people's nests.

[patrice]

11. P.S. At least with Federal or State supported homes there is at least the possibility of oversight.

All kinds of Exploitation is soooooooo easy amongst "the least of these."

[jody]

12. I understand "the least of these", my favorite parable. n/t

[patrice]

15. Just as true now as when it was first told.

And exploitation is just as possible now as it was 2000+ years ago.

[jody]

16. The preceding parable, same chapter, expects us to use our "talents" wisely. Together the two have

a powerful moral lesson if one only understands and practices it.

[patrice]

17. Mathew 24:? or 25:30 something? I'll go look for it, later.

I have a meeting I need to get to right now.

Thanks for responding to the reference.

:hi:

[jody]

18. Mat 25:14-30. n/t

[patrice]

19. Thanks, jody! See you around . . . nt

[KamaAina]

14. Because many state protection and advocacy agencies don't do their job

Every state (and territory, DC, etc.) has one. Find yours here:

http://www.ndrn.org/aboutus/PA_CAP.htm

P&As, unlike agencies like the one I work for, have the legal right to enter nursing homes whenever they wish, to inspect conditions as well as to ensure that the inmates patients who are there actually belong there. These people clearly do not. :grr:

Aside: The PC phrase describing this group is "people with intellectual disabilities". Pressure from self-advocates even convinced AAMR to change its name to AAIDD, the American Ass'n for Intellectual and Developmental Disabilities.

[Vinca]

20. In the 1960's many of these people were still in psychiatric hospitals.

It was very sad. I worked as an aide at an institution for a couple of years and I'll never forget one poor man who was about 50. He was a little slow, not horribly disabled, but had been placed in the hospital when he was 16 for threatening a family member with a knife. In the early 1970's he was transferred to a state facility and I imagine he died there.

[GreenPartyVoter]

21. I am going to guess that perhaps in some cases families want their loved ones nearby rather than at

a more appropriate facility that is much further away and therefore difficult to visit often.

[jwirr]

22. Minnesota 772? How old is this info? We have a law that they cannot

be in nursing homes unless they are age appropriate. Many of our counties even keep them in group homes or foster homes when they reach retirement age. There is one exception - if no appropriate home exists they can temporarily be place in a nursing home until a home can be found. Most of Minnesota's nursing homes are intensive care homes today. Even the elderly are placed in more appropriate settings if they do not require intensive care.

[madrchsod]

25. my wife works for a private company that takes care of clients....

that have many levels of impairment. there is nothing simple when dealing with the clients,the administration,and the state of illinois rules and regulations. since illinois passed the law forbidding mentally ill and disabled to have nursing homes as the primary residence the problems have subsided. there is still room for improvement but the system is far superior to the old days where they were housed in large state institutions.

[Cleita]

28. Maybe it's better than being homeless, but there still could be a better

solution.

[McCamy Taylor]

31. Where are they going to put the severely disabled? People who can not talk, walk, feed.

People who will spend the rest of their lives in bed, never communicating with anyone. These people do not all have family that can or will take care of them 24-7. Even if they are taken out of nursing homes, what ever place they end up in will become the equivalent of their nursing home.

Remember how they dumped all the mentally ill people on the street?

[LisaL]

32. What do you propose be done with them? Out on the street?

[WI_DEM]

33. it depends on if family can or have the means of taking care of them at home

and that might be asking lots of families too.