Living Independently

By Tim Wheat

Governor John Hickenlooper of Colorado

(DENVER, July 22, 2011) Gov. John Hickenlooper rejected ADAPT’s demand that he commit to Colorado pursuing the federal Community First Choice (CFC) Option within the Health Care Reform Legislation. CFC Option provides the state money to assist moving people from expensive institutions and nursing homes. Hickenlooper did believe it was a good idea and he did want to avoid delay in Colorado’s progress like we did in 2005 when we missed out on the first federal offering of the Money Follows the Person grant.

Dawn Russell gave the governor the opportunity to support the additional money by asking if he had heard the request.

“I got it,” said Hickenlooper.

Activists outlined the need for the CFC Option and changes to the Medicaid eligibility determination by the state. One ADAPT activist said that the group was still bitter that Colorado had failed to apply for Money Follows the person back in 2005. Colorado did apply for the federal funds last year and were awarded $22 million this April, but the delay has not only been expensive in millions of dollars, but also in the lives of people still trapped in institutions.

“If we don’t apply for CFC now we will just see that same kind of delay and our state missing out of federal funds to end the Medicaid bias,” said the ADAPT activist.

Hickenlooper got the message, but he would not go any further.

“I cannot make a commitment because I don’t know all the details,” said the governor.

Colorado ADAPT meets with the Governor

Following the twenty-five minute meeting with the governor the ADAPT group met and discussed the next steps. The indirect message from the Department of Human Services is that they are too busy to commit to pursuing the federal funds; although everyone in the state Department seems to be in favor of the proposed option.

ADAPT confronted the governor with this because his commitment would prevent Colorado from missing out on a beneficial, needed program like we did in 2005. The federal offering takes state resources to apply for the program; however, the funds that come into the state will help to improve the existing Medicaid program.

“It is not only the federal money for Colorado,” said Dawn Russell, “but it also means saving a lot of money by moving people out of expensive institutions.”

Meeting Bicha and Birch

The evening before ADAPT met with the governor, Sue Birch, the Executive Director of the Colorado Health Care Policy and Finance Division (HCPF) and Reggie Bicha, the Director of the Colorado Department of Human Services were at Atlantis to directly confront the problems with Medicaid eligibility. People in Colorado Eligible for Medicaid services are often forced an in-human amount of time simply to be determined eligible by the state system.

“I was Medicaid eligible when I left Colorado, I was eligible when I moved to Washington,” said Alice Bozeman, “but when I moved back to Colorado it took 83-days for the system to find me eligible again. Atlantis provided me services during that time even though the Medicaid system told them not to; Atlantis saved my life.”

Director Birch said that the Administration was setting eligibility determination as a high priority and that by the end of October HCPF would have some clear improvements for customers and providers to look at.

“We will be back to say we need you to come to the table to tell us how we can make the system work,” said Reggie Bicha to Dawn Russell who pressed the bureaucrats for a realistic timeline. “We are building the team now.”

Getting people out of nursing homes is a passion of ADAPT and activists pointed out how the system would provide Medicaid Long Term Care services to people in the nursing home but on the day they move out, their status had to be re-coded by the state system that could take many months. Providers of home services don’t get paid until that re-coding is complete. Not only are many providers unwilling to take nursing home transfers, but the system is obviously bias to pay expensive facility care over home and community services.

Alice Bozeman

Director Birch brought with her two employees of the statewide effort to interconnect the electronic information of Medicaid customers. Although there is much promise and millions of dollars being put toward the upgraded computer systems, those same systems have also often been the most oppressive of barriers that Medicaid recipients have faced.

Previously Dawn Russell had told of a person who she helped transition into the community out of a nursing home. Although he carried a letter with him from John Berry, the head of Long-Term Care in Colorado, no service provider would provide necessary services to him because the computer system did not list his Medicaid eligibility.

Even though someone in a nursing home is served by the same Medicaid program, it requires a human technician to “re-code” a person when they move out of the expensive facility. Regardless of the proposed computer system, this simple “human” glitch has slowed citizens move back to the community and is costly to the state.

More Photos: http://www.facebook.com/media/set/?set=a.196366823750996.62592.145326032188409&l=b3840738c1&type=1

ADAPT, Around Colorado, System Change ADAPT, Colorado Governor, HCBS, John Hickenlooper, MFP, money follows the person, Nursing Home Transition

By Steve Gold
Information Bulletin # 331 (4/2011)

Steve Gold

CMS issued proposed rules regarding Medicaid’s Home and Community-Based waivers.  76 Federal Register 21311 (4/15/11). One part of the proposed rules focused on Assisted Living Settings and whether these qualify under Olmstead’s “the most integrated setting” mandate.  CMS stated that “a State’s obligations under the ADA and Section 504 are not defined by, or limited to, the cope or requirements of the Medicaid program; however, the Medicaid program provides an opportunity to obtain partial Federal funding to assist in compliance with the ADA and 504 through the provision of Medicaid services.”

CMS noted that older Americans ” with and without disabilities” may wish to live together.  Because so many nursing homes have “converted” to ALS by changing their names and repainting the facility, it is important that advocates for older Americans “with and without disabilities” hold your State Medicaid agency accountable to make sure that the following CMS criteria are really being applied.  CMS will permit Medicaid waiver funding only if the ALS were really community-based settings.  Advocates can make sure the following criteria are implemented.

Here are the CMS criteria.  Unless they are complied with, a Medicaid funded ALS waiver does not comply with the ADA and 504.

1. “The individual has a lease.”  Leases trigger tenant rights and the proprietors of the ALS take on landlord duties. They are written and enforceable. State tenant rights statutes provide legal requirements and recourse that residents in an ALS could use if the landlord, aka provider, tries illegally to evict the tenant or act contrary to the lease.
2. The “Setting is an apartment with individual living, sleeping, bathing and cooking areas.”  These rights will prevent nursing home providers from just changing the name of their facilities.  Each apartment must have an individual cooking area - like a kitchen or kitchenette. Individual bathing is more than a toilet, but includes a shower and/or bathtub.  Wow, this is beginning to sound like a real apartment.
3. “Individuals can choose whether to share a living arrangement and with whom.”  Hey, isn’t that like what nondisabled tenants do?
4. “Individuals have lockable access to and egress from their own apartments.”  That’s fancy talk for a key and a lock.  Yes, the person in an ALS has the right to lock the door to her/his own apartment. What next? Invite whomever they wish into thei apartment?
5. Yes.  “Individuals are free to receive visitors.” Providers cannot screen of guests.
6. Individuals can also “leave the setting at times and for durations of their own choosing.”  They can go out whenever they want.  No night curfews.
7. “Aging in place, or allowing individuals to remain where they live as they age and/or support needs change.”  Advocates better make sure this is explicitly spelled out in the lease!
8. “Leases may not reserve the right to assign apartments or change apartment assignments.”  Make sure it’s explicitly in the lease so there is no doubt about this right.
9. “Access to the greater community is easily facilitated based on the individual’s needs and preferences.”  This means that the ALS provider, i.e., landlord, cannot arbitrarily deny a person the right to leave the ALS.  More affirmatively, does it suggest providing some assistance in gaining such access - i.e., “easily facilitated”?
10. If there is a “person-centered plan,” compliance with it is “not in and of itself a condition of the lease.”  Although the intent of this one is good, we’re not sure why compliance should ever be a condition of a lease.  People in ALS should be treated like adults.

If these points are not provided for, then the ALS are “not home and community-based because they are not integrated in the community.  A setting that is integrated in the community is a setting that enables individuals with disabilities to interact with individuals without disabilities to the fullest extent possible.”

CMS wrote that “we are particularly interested in gaining comments on these aspects of the proposed rule.”  Anyone want to wager that the ALS industry will be against these basic rights?

Advocates for the elderly and disabled Americans should let CMS know these rights are long, long overdue. If advocates do not respond, CMS will be swamped with ALS providers opposing the changes.

Please let CMS know what you think about ALS.  You have only until June 14 to respond.  If you do, refer to the file code CMS-2296-P.

Electronically - http://www.regualtions.gov and follow the instructions under the “more search options” tab.

Regular Mail:  CMS, Dept of HHS, Attention: CMS-2296-P [yes, I know that is different but I do not know which is correct.], P.O Box 8016, Baltimore, MD 21244-1850.

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.  Information Bulletins are also be posted on my blog at http://stevegoldada.blogspot.com/

To contact Steve Gold directly, write to stevegoldada@cs.com or call 215-627-7100.

ADAPT, Around Colorado, Around the country, Independent Living, System Change Nursing Home Transition, Steve Gold

By Ed Milewski

Editor’s Note: Ed Milewski will give testimony tomorrow in front of the Colorado Health and Human Services Committee on SB11-170 a bill to bring parity to Nursing Home Medicaid reimbursement and Home and Community Based Services. Tim Wheat of CPWD writes a companion piece to this about Ed’s nursing home transition into the community: Community Transition and Sustainable Independence.

Photo of Ed Milewski

I had told my daughter I would join her on her first century bike ride at the end of October 08. We had done a metric (61.5mi) before (Aug. 9 97) but she had never done 1oo miles before; and I’d gotten a bit out of shape my self. I’d been living at a Buddhist retreat center for about two years. So in April I started training.

It was May fifth, and a beautiful Southern California afternoon so I took a short twenty-five mile training ride from Morro Bay up the cost on Highway 101. I decided to turn back at the top of a short hill of about four hundred feet high. I just then realized that I’d forgotten to retrieve my mirror for my glasses from storage (that I usually use un road rides). Checked both directions and started to turn, BIG MISTAKE; I should have gotten off the bike and been able to fully check out both directions not having the mirror. I hadn’t noticed the car coming up from behind! (I’ll skip all the ifs; would have, could have, should have, ext. as they don’t really amount to a thing in the end. Except as above for fellow cyclist.)

About a month later I found out just how big a mistake it was. I awoke in a sub-acute care ward two hundred miles south in Camarillo; I had been in a coma for twenty-six days! I’d been in an accident; I’d suffered a fractured skull, a snapped neck, three broken ribs, a punctured lung, and a shattered right rotator cup and ball. I had a breathing tube coming out my neck, and a feeding tube out of my stomach. Most everything had healed by the time I woke up aside from the tubes hanging out of me. I wouldn’t be made aware of the accident report till a year later.

What surprised me looking back on my imageries, is that I wasn’t the least bit emotionally traumatized by it. I guess I’d absorbed the Buddhism better than I had thought. This was simply the way it was; it is said that “That which is, is the only life we have to live with” so wishing for things to be different wouldn’t have accomplished a thing. Not thinking about it further, I just went about what was required to regain my heath. I figured I had owed that much to those who had put me back together. I have found out since then they had said I had the body of a forty year old, not the fifty-nine year old that I was at the time. I guess those past eleven centuries and bike camping tours must have had some effect.

So I learned to walk with a walker quite unsteadily, a few feet at first, then longer as time went on. There was no movement in my right hand at first, and not much feeling in my right arm, either. The neurologist had thought he’d done everything correct, then as a result of this complication he sent me to have some vital-stimulation on my fingers. It worked only for my fingers at first; it took a few more months for my arm to feel normal. They had me work my legs on an exercise bike, and a table mounted pedaling device for my arms. The breathing tube was removed about July of 08.

While in Camarillo my daughter’s in-laws Ron and Linda came by often; and many friends and fellow sanga (fellow Buddhist practitioners).

My daughter Kristine had visited me a number of times, though she and her husband Pete had moved to Colorado years ago. It had been getting too expensive to remain living in California. The retreat center I had lived at was quite hilly and I couldn’t do my job in the foreseeable future; so we talked it over and she checked out nursing homes close to where she lived. It turned out lucky for me that she chose the one Boulder and not the one in Broomfield were she lived.

A of friend mine and fellow Ojai sangha member, Corinne who is a nurse practitioner, flew with me on Sept. 11th 2008, to Denver. We met my daughter and her husband there, Kristine had arranged transport for me in a specially equipped van to take us to Boulder Manner(a rest home). Kristine came with me. Corinne & Pete followed the van. Corinne stayed with my daughter for a week and visited often.

The therapy carried on much as it had before, but with much more in the way of speech therapy with the intension to assist me in my ability to swallow. The rooms I was assigned to and the roommates were more than acceptable; though I got along much better with the nurses, aids, and therapist then with the other clients.

I was able to keep on the road to recovery, with plenty of therapy; and by using a side- walk three-quarters of a mile long out side and with in the facility parking. Nobody said I could use it, but nobody said I couldn’t either; so I started with the wheel chair. I found out that I would need a therapist along if I was to use a walker outside. After a while I was allowed to use the walker inside by myself. I had asked my daughter to buy me a four wheeled walker, because Medicaid wasn’t aloud to pay for it till I left the rest home. The home had about a third of a mile of linked corridor loop inside that I was able to use at will with either the chair or walker.

I found out that I’d been sued by the person who had hit me for damage to her Bentley to the tune of twenty thousand dollars. After my daughter and I talked to her or her lawyer, I can’t remember which, and told her the shape I’m in and my present income; I’ve had no more contact with them.

There is an organization here called, Center for People with Disabilities, which I was alerted to by one of the social workers at Boulder Manor. CPWD helped me immensely in getting to know how to get about on the bus system, which is absolutely great here. The buses are wheel chair accessible (they lower in front, and will either put out a ramp or lift), and they have a couple of seats that fold up to allow for a couple of wheelchairs.

CPWD also helped getting me section 8 housing, and a wheelchair accessible apartment. Pete my son-in-law used my income tax return and my sister’s money to fly to CA. and pack my stuff and send it out here .So with the help of CPWD, the state’s program for moving costs, and furniture, I was able to move into my own apartment by September 2009. Still working hard, it’s a long hill back.

I got a hospital bed and feeding pump from Medicaid, (I still have to lay on my back with the top portion of the mattress is up thirty degrees for over night feeding of one hundred ml. of levity, a corn based version of ensure). I take another eight oz. can at about noon. I still use the wheelchair most of the time, I’m much faster in it that then with the walker.

I’ve got a nurse that comes by for an hour on Monday mornings to check my vitals, fill the weekly med-boxes, and ask me how I‘ve been. There is also a group of nurse’s aids who take turns with assistance for an hr. at 8am and 8pm, and a house keeper for about 2 hr. on Tuesday at noon to clean and do the laundry courtesy of CPWD. So I’m doing quite well considering the state of my health and the BIG MISTAKE.

ADAPT, Around Colorado, Around the country, Independent Living, System Change Boulder, Consumer, CTS, Ed Milewski, MFP, Nursing Home Transition, Transition