California : Crisis in Community Care and the Desperate Situation for Service Providers

This is from Bay Area Autism News, September 2015: "The Desperate Situation for Service Providers"

Carol McKinney from Harmony Homes testifies before the California legislature about the lack of funding and what it means to the people her agency serves and the workers who have endured the shameful lack of commitment to people with developmental disabilities.

Vulnerable seniors at risk from paid home caregivers

The VOR Weekly News Update from 9/14/12 reports on a national study: Dangerous Caregivers - Agencies place unqualified, possibly criminal caregivers in homes of vulnerable seniors


According to the Northwestern University News Center, July 10, 2012, "A troubling new national study finds many agencies recruit random strangers off Craigslist and place them in the homes of vulnerable elderly people with dementia, don’t do national criminal background checks or drug testing, lie about testing the qualifications of caregivers and don’t require any experience or provide real training."


The study was published in the July 13 issue of the Journal of American Geriatrics Society.

VOR notes that VOR will encourage the study’s authors to consider a similar study of caregivers for people with intellectual and developmental disabilities.

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Here is more from the Northwestern University News Center article by Maria Paul:

The author of the study Lee Lindquist, M.D., an associate professor of medicine at Northwestern University Feinberg School of Medicine and a physician at Northwestern Memorial Hospital is quoted in the article:

“It’s a cauldron of potentially serious problems that could really hurt the senior,” Lindquist said. “These agencies are a largely unregulated industry that is growing rapidly with high need as our population ages. This is big business with potentially large profit margins and lots of people are jumping into it.”

Some of the findings from the study:

• Only 55 percent of the agencies did a federal background check.
• Only one-third of agencies interviewed said they did drug testing - "'Considering that seniors often take pain medications, including narcotics, this is risky,' Lindquist said. 'Some of the paid caregivers may be illicit drug users and could easily use or steal the seniors’ drugs to support their own habits.'"
• Few agencies (only one-third) test for caregiver skill competency - "A common method of assessing skill competencies was 'client feedback,' which was explained as expecting the senior or family member to alert the agency that their caregiver was doing a skill incorrectly."
• Inconsistent supervision of the caregiver.

“'The public should demand higher standards, but in the short term, seniors need to be aware what explicitly to look for when hiring a paid caregiver through an agency,' Lindquist said."

Dr. Lindquist's advice on hiring caregivers:

10 QUESTIONS TO ASK BEFORE HIRING A CAREGIVER

1. How do you recruit caregivers, and what are your hiring requirements?
2. What types of screenings are performed on caregivers before you hire them? Criminal background check—federal or state? Drug screening? Other?
3. Are they certified in CPR or do they have any health-related training?
4. Are the caregivers insured and bonded through your agency?
5. What competencies are expected of the caregiver you send to the home? (These could include lifting and transfers, homemaking skills, personal care skills such as bathing, dressing, toileting, training in behavioral management and cognitive support.)
6. How do you assess what the caregiver is capable of doing?
7. What is your policy on providing a substitute caregiver if a regular caregiver cannot provide the contracted services?
8. If there is dissatisfaction with a particular caregiver, will a substitute be provided?
9. Does the agency provide a supervisor to evaluate the quality of home care on a regular basis? How frequently?
10. Does supervision occur over the telephone, through progress reports or in-person at the home of the older adult?

Links to comments on the CMS proposed regulations (CMS-2249-P2) for Medicaid waivers

It is always illuminating to read comments on proposed policies for people with disabilities from people and organizations with differing perspectives, agendas, and interests. Here is the link for finding comments on the proposed regulations on Home and Community Based Services waivers from the Centers for Medicare and Medicaid Services  (CMS-2249-P2). To read the comments, click on the blue highlighted text that begins with the abbreviation for the state and the name or organization of the commenter. Sometimes the comments appear in full on the opened page, but usually they are attached, either as a Word document or a PDF file. Look for "View Attachments" and click on "DOC" or "PDF" to open.

HCBS Medicaid waivers have been around for a long time and are used to pay for community services as an alternative to services provided in institutions. Medicaid law identifies institutions as nursing homes, Intermediate Care Facilities for the Mentally Retarded (ICF/MR), hospitals for mental diseases and other hospital settings. In MIchigan, the Habilitation Supports Waiver (HSW) is the Medicaid waiver for people with developmental disabilities. It is currently used to pay for a wide range of services and settings from supported living services provided in the disabled individual's own or family's home to state-licensed community-based facilities that provide more intensive care and support. It also pays for community living services that enable an individual to fully participate in community activities and services, as well as specialized day and skill training programs in accordance with the individual's plan of services developed through a person-centered planning process.

If these proposed regulations were to become final as they are now written, they would make it more difficult to use Medicaid waiver funding to pay for settings that are deemed to have "qualities of an institutional setting" as defined by the regulations and ultimately the Secretary of the U.S. Department of Health and Human Services. This would undermine and lead to the likely closure of many specialized programs that have been designed by family and community organizations that are person-centered, consumer-driven and based on choice. Also threatened would be state-licensed facilities and other programs operated by Community Mental Health agencies or CMH contracted providers.

Here are links to comments that are of special interest to people living in Michigan:

• Comments from the Michigan Department of Community Health
• Comments from Michigan Protection and Advocacy Services (MPAS)
• Comments from the ARC Michigan

The national organization for protection and advocacy agencies, the National Disability Rights Network (NDRN), has also commented on the proposed regulations. Many national and statewide organizations have submitted comments that agree with the comments from NDRN.

Here is an especially poignant plea from 86-year old parents who have finally found the right place for their son and fear it might be threatened by these regulations.

Michigan Direct-care workers vs. Michigan CEOs and Board Presidents

A commenter on my last blog entry on Michigan's Direct-care Workforce suggested I check out the compensation for some of the Executive Directors, Board Presidents, and CEOs of provider agencies. The place to find these figures and other information about non-profits is on the Website Guidestar. Registration is free and it gives you access to the IRS Form 990 for the non-profits in their database. 

Here is a sampling of what I found:

JOAK American Homes, Inc., in Ann Arbor, Michigan 

• Mission: "The corporation is set-up to provide residence, treatment and support to children and adults with mental retardation, mental illness, substance abusers and shelter for homeless citizens in various counties in the state of Michigan."
• The compensation for Board President Josephine Akunne was $235,680 for 2009. It appears that she was paid an additional $44,000 as President of the Board of four other related non-profits.

Hope Network of Grand Rapids, Michigan

• There are several Hope Network non-profits providing services to people with developmental disabilities and mental illness.
• President of the Board of Directors Phillip Weaver received compensation from "related organizations" of $200,248.
• Five more Board members made over $100,000 apiece.

Progressive Residential Services of New Mexico and Progressive Residential Services of Tennessee, both at the same address in Troy, Michigan, provide services to people with developmental disabilities, mental illness and other disabling conditions.

• CEO Everett DeHut was paid $346,196 base compensation for 2009.

Community Living Services, Inc. in Wayne, Michigan provides "care, treatment, housing education, and protection of developmentally disabled children and adults."

• Executive Director James Dehem  received $189,776 in base compensation for 2009.

As I have said for years, "non-profit" does not mean  "no money".

Michigan comments on CMS proposed rules (CMS-2296-P)

If you would like to see a good sampling of comments from Michiganders on the CMS proposed rules, follow this link.

The proposals from the Centers for Medicare and Medicaid Services would limit where Home and Community Based Services could be provided, causing disruption for people already living and receiving services in settings that would no longer be approved by the CMS. For future recipients of HCBS services, their choice of options would be restricted to those determined by CMS to be "integrated in the community"  and "not institutional in nature".

As you will see, there are a variety of views on these proposals and many thoughtful responses.

Understanding Michigan's HCBS Waiver for developmental disabilities

After wading through a swamp of information about Medicaid waivers for people with developmental disabilities, I have come up with the following summary. I am no expert on this and any additional information, corrections, or comments are welcome.

The CMS (Centers for Medicare and Medicaid Services) is asking for comments on proposed changes to Home and Community Based  Services waivers. States apply for waivers of specific parts of Medicaid law so that they can use Medicaid funding for targeted groups of people with disabilities, who "but for the provision of such services" would require the level of care provided in a hospital, a nursing facility, or an intermediate care facility for the mentally retarded. These services are considered to be "medical assistance" and must be provided to eligible individuals in accordance with a written plan of care. The costs for such services must not exceed the estimated cost of providing services in an institution (a hospital, nursing facility, or ICF/MR).These waivers to the states are called 1915(c) waivers because they are described in Sec. 1915(c) of the Social Security Act.

Michigan has several waivers and demonstration projects funded by Medicaid. The HCBS waiver for people with developmental disabilities is called the Habilitation Supports Waiver (HSW). Waiver funds go to Community Mental Health agencies to provide an array of services for eligible adults with developmental disabilities. Michigan has a specific number of HSW slots approved by the CMS per fiscal year. The assignment of slots is managed by the Michigan Department of Community Health.  Each PIHP (that's the Washtenaw Community Health Organization for Washtenaw, Livingston, Lenawee, and Monroe Counties) has an annual allocation of active enrollments that cannot be exceeded. The need for waiver services must be written into the persons plan of service developed through the person-centered planning process.

If you google "Michigan HSW overview", one of the top items that comes up is a 2010 Powerpoint presentation by the Michigan DCH that includes detailed information on the 1915(c) Habilitation Supports Waiver and the services available.

Many families of even the most severely developmentally disabled adults do not know that the waivers exist. When they are informed, they often struggle with mental health agencies to get even the most basic needs of their loved-ones met. So the waiver is no panacea, but to begin applying for waiver services, contact your local community mental health agency. If you have an adult developmentally disabled family member, it is possible that he or she is already covered by the waiver. You may have been asked to sign a form to voluntarily waive the right to services in an ICF/MR (Intermediate Care Facility for the Mentally Retarded) in exchange for community-based services under the waiver. Community Mental Health agencies can be stingy about revealing much information about the waiver because you might actually want and need those services!

Now that you have some information on how waivers are supposed to work, you can try to figure out what the federal CMS is proposing to change and how it will affect you and your family member.

I will have future blogposts at the The DD News Blog on the specific changes that are proposed. You have until June 14th to submit comments to CMS.

Here is a link to information on Michigan's specialty services waivers that list services available under each waiver and who to contact for more information. 

For a complete list and explanation of waiver services go to the Michigan Medicaid Provider Manual and scroll down to Section 15 - Habilitation Supports Waiver for Persons with Developmental Disabilities

Overview of housing possiblities for people with autism

I received a comment on my recent blog post on the CMS proposed regulations for HCBS waivers. Not only is the comment insightful, but it includes a link to a report on housing possibilities for people with autism that anyone interested in this issue should look at.

Here is the comment:

It appears to me that the proposed change is a hatchet rather than scalpel approach as it relates to HCBS Settings. The risk is that a very narrow interpretation of what "community" and "appropriate to their needs" mean will prevent development of specialized group homes or small, campus like developments in non-urban areas. The elimination of these choices will particularly fall hard on adults on the autism spectrum disorders who, any of the too few existing providers will tell you, very often require lower staffing ratios, higher degrees of support, and very specialized, highly structured programs and facilities. There is an acute need to create more housing stock and programming for adults with autism and this proposed reg looks like it'll kill development. For more on what the autism community actually wants, please take a look at the "Opening Doors" report: http://www.autismcenter.org/documents/openingdoorsprint.pdf

I briefly looked over the Opening Doors report from the Southwest Autism Research & Resource Center (SARRC). The report is packed with information on a full range of housing alternatives, funding sources, model programs, diverse living arrangements, considerations for design of housing and living spaces, and much more. Any individual or organization thinking about developing housing and living arrangements for people with autism or any other disability, for that matter, should take a look at this.

Thank you, anonymous, for taking the time to share this information.

Michigan Home Help Services for people with disabilities

The Home Help Services Program is administered by the Michigan Department of Human Services and is paid for by Medicaid. It allows adults with developmental and other disabilities to receive help so that they can stay in their own homes or their family's home. Home Help funding is also given to people in supported living homes to supplement other services provided by the local Community Mental Health agency.

Home Help Services include preparing meals, clean-up and feeding, toileting, bathing, grooming, dressing, moving around the house, taking medicine, shopping, laundry, and light housework. People enrolled in the Home Help Services program employ their own provider who may be a friend or relative (including a parent if the adult-child is over 18 years old).

The number of hours paid for depend on a functional assessment of Activities of Daily Living and Instrumental Activities of Daily Living. The maximum amount of money available under regular home help services is $549/ month. Expanded Home Help Services for people who need more help pays up to $1300/month depending on the need for more services. Funding over $1300/month is possible with approval by the Michigan Department of Community Health.

To learn more about the program and to apply for benefits contact your local Department of Human Services. For Washtenaw County, contact:

Department of Human Services
22 Center St.
Ypsilanti, MI 48198
Phone: (734) 481-2000

If your funding for services is decreased or denied, you must be given an Advance Negative Action Notice (a notice that tells you why the action was taken and your right to appeal the decision). You have the right to appeal the decision through a Medicaid Hearing. If you ask for the hearing before the date the action is to go into effect, the service and funding must continue until a decision has been made by a Medicaid hearing officer.  Here is a brochure explaining the basics of Medicaid Hearings.

As a guardian of a person in the Home Help Program, you may file for a Medicaid Hearing on behalf of the person, but you must send a copy of the Court Order from the probate court granting guardianship with your hearing request.

More information on Home Help Services is available in the Adult Services Manual. Click on the Independent Living Services Program Overview, Requirements, and Procedures (ASM 361, 362, and 363) for much more information on Home Help Services.

Florida parents plan communities for developmentally disabled

In Florida, there are more than 18,000 developmentally disabled people waiting for services and residential placements. That translates to a 10 -15 year wait for most people. Parents have taken this dilemma into their own hands and have begun developing planned communities for their family members. Noah's Ark of Central Florida has plans to create communities modeled on retirement communities that are home to seniors all over the country.

The communities will include families and caregivers of their primary residents, people with developmental disabilities. They will be a blend of apartments, villas, group homes, and single-family homes with spaces for socializing, recreation, and vocational and educational activities. One village, Noah's Nest, has three homes near downtown Lakeland, Florida.

One obstacle the parents faced was a state law that prevented group homes from being established within 1,000 feet of each other, so they lobbied the Florida legislature to change the law. According to an article in the Miami Herald, April 27, 2010, they were opposed by advocates who claimed that the planned communities are institutions that segregate people from the rest of society:

"In our society, we call places like this institutions," said Kingsley Ross, who represents Sunrise community, a nonprofit organization catering to the developmentally disabled and the elderly. "People with developmental disabilities have to be in contact with good models of behavior. If you surround them with people that don't have normal types of behavior, what we are going to see is more people with bad behavior."

[Kingsley Ross, who worries so much about other people's behavior, is a registered lobbyist for the Autism Society of Florida and Sunrise Community, Inc., a non-profit provider of group homes and other services for people with disabilities and seniors.]

The family members, however, have a different view . Many of their loved-ones have already experienced "community living" and have found it to be isolating, not fulfilling, and even dangerous. Families are not trying to compete with options that work well for many people with disabilities, but to offer more options and choice based on the needs and preferences of their loved ones.

The law to rescind the restriction on group homes was passed and signed by Governor Crist on June 3rd, 2010. Well done, Florida parents!

[See also: Michigan group homes for severely disabled]

March 2010: News from the WCHO and the Recipient Rights Advisory Committee

I have been attending Washtenaw Community Health Organization (WCHO) Board meetings for most of the last year in an attempt to understand and follow changes in the agency during the current economic crisis. Very few outsiders attend these meetings—most of the participants and attendees are either Board members or staff from the WCHO or CSTS (Community Supports and Treatment Services). The Board deals with complex issues concerning money and policy that affect the people they serve but, in my opinion, their decisions are not always anchored in the realities of life that we and our family members face each day. The Board does best when we keep them informed and connected to how their actions affect our family members.

For example, at the end of last summer, there were plans afoot to contract out all the vocational and skill-building programs that were operated by CSTS, a public agency. This was part of the County Board of Commissioners move to close a huge budget deficit. Families went to the WCHO and the Board of Commissioners with heartfelt arguments for why the CSTS programs should not be eliminated or changed. Eventually the CSTS employees' union made concessions to the County Board, their employer, that preserved most of their jobs. Then, the WCHO decided to continue contracting with CSTS for vocational and skill-building programs without interruption. Another outside agency that provides supported employment and skill-building programs for other WCHO consumers, was going to be dropped by the WCHO, which would have caused disruption to the people served by that agency. The outside agency felt that the WCHO had made the decision with inaccurate information. The WCHO then decided to continue the contract without interruption. Not all policy and funding decisions work out as well as this one did, but it would never have happened if no one had spoken up.

WCHO Board funding outlook

During a Board discussion on WCHO funding, the Executive Director Patrick Barrie said that continued federal stimulus funding and Medicaid funds would help the agency (and the state) make it through the next six months. If the health care reform legislation makes it through Congress, there will be many opportunities to expand Medicaid funding and to take advantage of demonstration projects. This could avoid cuts that are under consideration by the Michigan Senate. If health care reform fails, there are other possibilities to consider, (passing out Prozac was suggested) but no one is very optimistic about any of these. [Health care reform did pass, so hold the Prozac for now.]

Recipient Rights Advisory Committee Report

The Recipient Rights Advisory Committee for the WCHO has worked on decreasing the number of complaints having to do with "Failure to Report". (If an employee of a WCHO programs fails to report a possible rights violation, that is in itself a violation of rights.) Through training of people who work in group homes, supported living situations, and in other programs funded by the WCHO, the Recipient Rights Office has emphasized the responsibility of employees to report rights violations that they see in their work with people served by the WCHO. There has been a dramatic increase in the number of rights violations reported, perhaps due in part to this emphasis.

There is concern by the Recipient Rights Committee in the large number of substantiated complaints in unlicensed supported living sites for people with developmental disabilities. There were 71 reported for the last fiscal year. Rights complaints in licensed group homes for people with developmental disabilities came in a distant second, with 26 complaints. Substantiated rights complaints increased 50% overall during the last fiscal year.

The Recipient Rights Advisory Committee believes that there should be further investigation of this problem. Some of the causes of the problem may be outside the scope of the Recipient Rights Office, however. For instance, when there are complaints that services are not suitable to the individual’s needs, it may be that Person-Centered Plans are not adequately addressing the needs of the people served. The cause of the problem may lie with staff training, lack of accurate information to families, misunderstanding of PCP requirements, etc.

The WCHO Board is interested in supporting the idea of further investigation into these problems, but asked that the committee come up with a more specific proposal.

WCHO Oversight of Provider Agencies

In May 2009, the WCHO Board asked for a report from the Organization Operation Committee (that is an awkward name, but that really is what they call it) to give the Board a better understanding of how the WCHO carries out its oversight and monitoring responsibilities of the provider agencies that are contracted to provide services to WCHO consumers.

This request was motivated in part by problems with Community Residence Corporation, an agency that provides community living supports to consumers in unlicensed settings as well as staffing for licensed group homes. According to a report to the OOC on Provider Oversight & Monitoring (June 2009), since Michigan was granted the Medicaid 1115 Waiver, Community Mental Health agencies have created opportunities for more consumer choice, resulting in the growth of the contractor provider network. Many consumers have moved out of licensed settings into smaller supported living sites. Currently there are over 220 individual service delivery sites that must be monitored. This rapid growth in the number of sites has strained the capacity of the WCHO to assess the services being provided and to oversee and monitor contracted providers.

The June 2009 report goes on to discuss "risk management" and the current "monitoring framework".

I did not attend the July WCHO Board meeting, but at the August 5th, 2009 OOC meeting there was further discussion of continuing problems with oversight of provider agencies. Community Residence Corporation has been given provisional status to continue to provide services. Although there has been staff training, there was a question as to whether training included a "competency component" - did the training make the staff more competent at handling situations that have caused problems in the past?

There was also a discussion of two contracts that WCHO was recommending be approved:

One was to add residential services for a consumer with predatory sexual behaviors who is leaving Mount Pleasant Center to a contract with Spectrum Community Services. Spectrum has experience with this population and has a licensed home in Wayne County that will cost the WCHO $188,106 per year. (There are three other residents who live in the home at the same cost per person.)

Leila Bauer, a WCHO Board member and OOC member, had questions about the ability of Spectrum to provide the services. She has been in contact with families whose family members live in a supported living situation managed by Spectrum. Even though staff are there 24 hours per day, the police have had to be called several times, and there have been some serious incidents. Families do not know what their rights are or who to complain to and Spectrum has not been responsive.

The OOC decided to recommend the contract for additional services by Spectrum. In addition, a recommendation was made by the committee for the WCHO Board to file a recipient rights complaint on behalf of the consumers at the supported living site and for recipient rights to begin an investigation into the quality of services being provided.

The second contract was for the CHC Group, LLC that currently provides services in Monroe County. The proposal is to add CHC to the community living supports panel to provide Supported Employment services in Washtenaw County. The OOC has been discussing the problem of having too many providers to oversee, and the question came up as to why they should add another provider? The OOC recommended approval of the contract, but was not entirely comfortable with the decision.

These particular items on the OOC agenda were the ones I paid attention to because they affected people with developmental disabilities. There were other items involving other WCHO consumers, but those groups will have to get their own blog.

The Committee had many thorny issues to deal with and I had the impression that they lacked all the information necessary to feel comfortable with their decisions, but they are expecting to recieve more information and to be kept informed by WCHO staff.