Home > Uncategorized > Federal deinstitutionalization bill would lower human services care standards

Federal deinstitutionalization bill would lower human services care standards

Unfortunately, the entire Massachusetts congressional delegation has signed onto a newly filed bill in Washington, which, as currently written, would encourage further unchecked privatization of human services, diminished oversight, and reduced standards of care across the country.

In Massachusetts, the bill, known as the federal Disability Integration Act of 2019 (HR.555 and S.117), would threaten the Wrentham Developmental and Hogan Regional centers, the state’s only two remaining residential facilities for the developmentally disabled that meet federal Intermediate Care Facility (ICF) standards.

Moreover, we think the bill does not comply with the law under the 1999 U.S. Supreme Court decision in Olmstead v. L.C., which recognized the value and legitimacy of institutional or congregate care for those who want and need it.

HR.555 (and the Senate version, S.117) calls explicitly for the the “transition of individuals with all types of disabilities at all ages out of institutions and into the most integrated setting…” (emphasis added).  The legislation specifies that the federal government would provide funding for technical assistance to states “to prevent or eliminate institutionalization” of persons with developmental disabilities.

This language does not comport with Olmstead, which held that that the Americans with Disabilities Act (ADA) does not condone or require removing individuals from institutional settings when they are unable to benefit from a community-based setting. In addition, the ADA does not require the imposition of community-based treatment on patients who do not desire it.

At the very least, the language in this bill should be changed to respect the choice of individuals, families, and guardians, either to apply to get into, or to remain in congregate-level care facilities.

So far, we have made our concerns known to the office of Senator Elizabeth Warren, and have requested that Warren reconsider her co-sponsorship of the bill. A staff member said the office will look into our concerns and will convey them to the office of Senate Minority Leader Charles Schumer, the lead sponsor of the bill.

We plan to contact the office of Senator Edward Markey and other members of the Massachusetts delegation as well.

Failure to acknowledge problems with deinstitutionalization

HR.555 perpetuates the myth of institutions as providing “segregated” care. It fails to acknowledge the relentless pursuit of deinstitutionalization in recent decades, which has caused “human harm, including death and financial and emotional hardship.”

What the bill particularly fails to take into account are the major upgrades in care and standards in congregate-care facilities since the 1970s, largely as a result of federal lawsuits brought in Massachusetts and other states.

The irony is that while those lawsuits also led to the introduction and growth of privatized, community-based care throughout the country, poor oversight and low pay and training of staff in the privatized group-home system has recreated many of the warehouse-like characteristics of large institutions prior to the 1980s.

The bill falsely purports to encourage choice

HR.555 states that its purpose is “to clarify that every individual who is eligible for long-term (human) services and supports has a federally protected right to be meaningfully integrated into that individual’s community…” in order to receive those services and supports.

But the bill states that a group home or other facility can only be considered community-based if it has four or fewer unrelated residents. That is an unworkable and actually choice-limiting proposition that is almost as radical as the position of the National Council on Disability that an institution is a facility with four or more people who did not choose to live together.

So, while the bill purports to be in favor of choice, the only choice it recognizes as valid is a community-based setting; and that means a residential setting with four or fewer residents.

But the Supreme Court held in Olmstead that congregate care is appropriate for some persons with developmental disabilities. In Massachusetts, we have repeatedly heard from families and guardians who are satisfied with the high level of care delivered in the Wrentham and Hogan centers.

The people remaining at Wrentham and Hogan are more profoundly disabled and have more serious medical issues on average than in other DDS settings. These people need the intensive care that is regulated by ICF-level standards. HR.555 does not recognize the distinctions or the different levels of care needed by different individuals.

In fact, the real purpose of the bill, in our view, is to eliminate the choice of ICF-level care, which is based on strict federal standards for staffing, in particular.

The political impetus to close all remaining congregate care settings comes, as it has for years, from state-funded, corporate human services providers, who have a conflict of interest because they stand to gain additional state contracts as state-run facilities are closed and their functions are privatized.

Massachusetts, as do most states, allows the providers to operate under a waiver of the ICF regulations, which permits lower standards of care for community-based services. Even so, the cost of that care is oustripping the ability of states to pay for it.

The cost is not identified

HR.555 would require states to offer community-based services immediately to all persons needing such services, and those jurisdictions would not be allowed to impose cost caps or use waiting lists. The bill, however, does not identify what the cost of such a requirement would be or where the funding would come from.

The VOR, which advocates nationally for persons with developmental disabilities, calls the bill “clearly unaffordable.” Simply encouraging, funding, or requiring the transfers of more people out of institutions into community-based care will only exacerbate problems in the latter system.

To the extent that the bill recognizes the cost of care, it attempts wrongly to place the blame on institutions. It refers to “billions of dollars in unnecessary spending related to perpetuating dependency and unnecessary confinement.”

This statement, however, does not recognize the high cost of executive salaries and of mismanagement in the community-based system. In Massachusetts, the cost of institutional care is less than 10% of the cost of privatized, community-based care.

The bill, however, does appear at least to recognize that there are costs in providing community-based care because the bill would require states and providers to review their funding sources and analyze “how those funding sources could be organized into a fair, coherent system that affords individuals reasonable and timely access to community-based long-term services and supports.”

Such a review sounds reasonable, and we think it should be done before legislation is enacted that would encourage further deinstitutionalization. As noted, the deinstitutionalization required by this bill would place a significant financial strain on the community-based care system for which no additional funding has been identified.

We would suggest that people contact the members of the Massachusetts congressional delegation, whose contact information can be found at this site: https://lwvma.org/your-government/federal/.

We hope all of the members of the delegation will reconsider their support of HR.555 and S.117.

  1. Anonymous
    June 7, 2019 at 11:47 am

    In the past, weren’t developmentally disabled persons leaving ICFs promised equal or better services? Was that promise kept?

    • June 7, 2019 at 12:05 pm

      No, that promise has definitely not been kept in many cases.

  2. Anonymous
    June 7, 2019 at 2:00 pm

    H.R. 555 begins with a false premise, namely that developmentally disabled persons who reside in settings that those who are opposed like to call ‘institutions,’ are somehow there against their will and that the ICF (intermediate care facility) setting is in itself a form of discrimination. In fact, the residents of such facilities are the most disabled among us, often have complex medical needs, and choose to reside in such facilities where their needs are addressed appropriately. It needs to be stated here that the services available in an ICF are not currently available elsewhere and that not all disabled persons are capable of “independent living.”

    H.R. 555 refers to an ADA “integration mandate.” This is not accurate, as the ADA’s integration regulation requires that individuals with disabilities receive public services in the most integrated setting appropriate to their needs. [Emphasis added.] Americans with Disabilities Act (1990).

    This regulation was at issue in the Supreme Court’s Olmstead decision. In Olmstead, the court held that states are required to provide community-based services for people with disabilities who would otherwise be entitled to institutional services when: (a) such placement is appropriate; (b) the affected person does not oppose such treatment; and (c) the placement can be reasonably accommodated, taking into account the resources available to the state…
    Olmstead v. L.C., 527 U.S. 581 (1999).

    Considering that, for the most part, the people addressed by this bill are older in age (ICF placement has been denied to persons requesting this placement and services for several years.), this bill while acknowledging a need for “long-term services and supports,” fails to mention the individual needs of the persons, and how and where those needs would be met. There is one reference to “informal caregivers” but no specific mention of skilled nursing care or care by other licensed providers. There is mention of “assistance” with “health-related tasks” but does not define what that means, yet goes on at length about various types of living situations that would be acceptable, ignoring the shortage of accessible and affordable housing and also ignoring housing discrimination. Incidentally, the entire ‘group home’ system would need to be reworked in order to ensure compliance, as a four person per house limit is proposed.

    There is no mention of parents, guardians, or family members—those who know these disabled individuals the best—and in this respect again there is conflict with the decision in Olmstead.

    This bill, while purporting to address disability discrimination, is in itself discriminatory, in that it dictates where disabled persons can and cannot live, which is anti-constitutional rights.

    Make no mistake; this bill has nothing to do with integration. It is rather one in a series of actions to deny developmentally disabled persons needed services. Those who would benefit from such legislation, and who have been operating relatively unchecked (self-evaluating) would be wise to rethink lest the spotlight of compliance shine their way.

    Recent closure of sheltered workshop settings comes to mind. Evicting older disabled persons from their long-time homes and placing them in isolated ‘group homes’ with “informal caregivers” does not equate to meaningful integration.

    • June 7, 2019 at 4:02 pm

      We agree entirely with the above assessment of HR.555.

  3. Anonymous
  4. Anonymous
    November 21, 2019 at 10:45 pm

    So, according to this bill, nursing homes of all types would be considered segregated, congregate care facilities and would be slated for closure. Isn’t it true that one must require nursing home level of care to be admitted to an ICF? So, ICFs are nursing homes for profoundly developmentally disabled persons.

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