Creating a safe home care plan for a loved one with dementia

For many senior citizens, being able to “age in place” and stay in their  home is a really high priority. The obligation to use Medicaid dollars to support aged and disabled individuals in the least restrictive environment has been a cornerstone of federal policy since the Olmstead decision was issued by the Supreme Court in 1999.  In addition to that there is the obligation to utilize “person-centered planning” and to individually tailor the services being provided. The  New Jersey Medicaid Long Term Services and Supports (MLTSS) program which provides Home and Community based Services (HCBS) is required to develop procedures that will adequately address the needs of the individual so that he or she can be adequately supported in the community environment.

The Centers for Medicaid and Medicare Services issued an interesting “FAQ” on the subject of how to address the individual needs of a Medicaid recipient who has a tendency to “elope,” “wander” or “exit-seek.” While that FAQ is geared to program administrators and policy makers, it seems to me that it provides useful guidance to any of you who are engaged in senior care planning for someone who has this problem. For example: ” Assessing the patterns, frequency, and triggers for unsafe wandering or exit-seeking through direct observation and by talking with the person exhibiting such behaviors, and, when appropriate, their families. •Using this baseline information to develop a person-centered plan to address unsafe wandering or exit-seeking, implementing the plan, and measuring its impact. •Using periodic assessments to update information about an individual’s unsafe wandering or exit-seeking, and adjust the person-centered plan as necessary.”

What I have learned over the years from the thousands of families I have advised is that, in an organic way, they are instinctively engaged in Person-centered service planning for their loved one. They try hard to sustain the activities that the loved one enjoyed and avoid the things that the person loathed. Out of a sense of respect and honor, they try hard to incorporate what has always mattered to their parent.  Yet Elder care planning often needs to deal with new situations and behaviors that present themselves as a result of  underlying dementia. Sometimes it isn’t clear whether the behavior is willful and intentional or is just an erratic problem triggered by unpredictable things as a result of Alzheimers or other dementia. In either case, the caregiver needs to find strategies to keep the person as safe as possible.

Call us for advice on elder care planning legal issues … 732-382-6070

What if the Medicaid home care services aren’t provided? part II

Previously I blogged about the problems faced by Medicaid-eligible people living in home and community-based settings when there isn’t a sufficient provider network to provide the services needed to maintain them in their residences, or there is substantial delay in getting the services started. The issue is that the government is obligated to provide the services in the least-restrictive setting under the Olmstead decision and the Americans with Disabilities Act (“ADA”) Now there are developments in Ohio which deal with that problem. In Ball, Burba et al. v. Kasich, Governor of Ohio, the  plaintiffs alleged that “ the failure of defendants, Ohio’s governor and several state agencies, to provide them with home- and community-based services forces plaintiffs to rely on volunteer family caregivers to remain at home and places them at serious risk of institutionalization in a large Intermediate Care Facility (“ICF”).” The State moved to dismiss, saying that being ‘at risk” doesn’t give them standing to sue. The U.S. Department of Justice has now filed a Statement of Interest, asking to intervene (i.e., participate) in the case.

The USA wrote to the Judge that “The United States files this Statement of Interest to clarify that non-institutionalized individuals with disabilities who are not currently receiving state-funded home- and community-based services may bring a claim that a public entity has placed them at risk of institutionalization or segregation in violation of the “integration mandate” of Title II of the Americans with Disabilities Act. See 28 U.S.C. § 517. “

To me, this is an exciting development. Eligible people who aren’t receiving services to which they are entitled are clearly being injured by such governmental delay. People who need 24/7 care and lack sufficient care services in their homes are clearly at risk of nursing home placement. The injury could be irreparable.

Call us for advice and assistance with Medicaid applications and advocacy for services … 732-382-6070

Disability Integration Act of 2015 is a pending bill with great promise

Sen. Chuck Schumer (D-NY) introduced a bill in Congress that’s designed to ensure that Medicaid-eligible people who are aged or have disabilities can receive their necessary services out in the community through the Medicaid Home and Community Based Services program (HCBS). Aging in Place is what it’s all about. The bill is S-2427 and here it is. The bill has been referred to the Senate’s Committee on Health, Education, Labor, and Pensions.

Sections 2 and 3  state the problem succinctly: “(2) While Congress expected that the [Americans With Disabilities Act of 1990] ADA’s integration mandate would be interpreted in a manner that ensures that individuals who are eligible for institutional placement are able to exercise a right to community-based long-term services and supports, that expectation has not been fulfilled.  (3) The holdings of the Supreme Court in Olmstead v. L.C., 527 U.S. 581 (1999), and companion cases, have clearly articulated that individuals with disabilities have a civil right under the ADA to participate in society as equal citizens. However, many States still do not provide sufficient community-based long-term services and supports to individuals with disabilities to end segregation in institutions.”

State Medicaid Programs to date may choose the extent to which they offer home and community-based services. While the percentage of dollars being spent on HCBS has been growing, waiting lists in some states are tremendous. In New Jersey, an eligible person often has to really fight to get sufficient hours of home health aide services. ALso, in New Jersey the MLTSS Medicaid HCBS Program will not provide 24/7 home health care.   ABD_2016_Overview

Coordinating care in the community is clearly more complicated than arranging for care in a one-stop-shopping nursing home setting. There can be a need for transportation to shopping and medical appointments, prescription delivery, grocery delivery, home health aides, meals on wheels, housekeeping, and more. Nevertheless, the federal government has been promoting aging-in-place initiatives for years, such as NORC (Naturally Occurring Retirement Communities). S-2427 confirms the proposition that individuals have a RIGHT to receive their care in the least restrictive setting available, which is what Olmstead was all about.

Call us for legal advice and representation concerning Medicaid eligibility, applications and appeals … 732-382-6070

Disability Integration Act would mandate that states provide home care services

Senator Chuck Schumer introduced S-2427, the Disability Integration Act, on December 5, 2015,  to counteract discrimination in Medicaid funding which is disproportionately allocated towards nursing home services. One effect of the bill could be to force States to allocate funds within their Medicaid budgets for Home and Community-Based Services (MLTSS-HCBS) for Medicaid applicants who can reside in the community with adequate long-term services and supports. Some States have no HCBS program at all because it is a “waiver” of the federally-mandated institutional Medicaid program, which pays for nursing home care for eligible individuals. Other States have so few slots that a person who applies will never come off of the waiting list.

According to the gov.track summary, “States, local governments, or insurance providers may not discriminate against such individuals in the provision of community-based services by: (1) imposing prohibited eligibility criteria, cost caps, waiting lists, or payment structures; (2) failing to provide a specific community-based service; or (3) requiring an individual to receive a service in a congregate or disability-specific setting.”

This Bill is an important step to get Congress talking about how to implement a community-integration mandate that dates back to the U.S. Supreme Court’s decision in Olmstead. It is a crying shame that a Medicaid-eligible frail disabled or aged person has to leave their community and move into a nursing home — or remain in a nursing home after their post-hospital care rehabilitation — when they could thrive in the home environment, just because the Medicaid dollars are only available in the nursing home.

New Jersey has an HCBS program for Medicaid applicants, but it is only a part-time program. It used to be called “Global Options,” and previously, there was an income cap which barred people whose monthly income exceeded three times the federal poverty rate. Fortunately, that restriction was lifted, so now, home care applications are expanding. Read my next post for more about the process.

For legal advice and help with your Medicaid application or appeal, call us at … 732-382-6070