PA: Fix the Direct Support Professionals Crisis

See Fix the Direct Support Crisis

By the numbers:

• Direct Support Professionals (DSPs) in Pennsylvania make an average wage of $11.54/hour. They provide daily support to people with intellectual disabilities and autism. 
• $11.54/hour is $4 per hour less than a living wage for a working family in Pennsylvania. 
• The turnover rate of DSPs is 26.9% (over 8,500 DSPs every year) and the vacancy rate for DSPs is 12.1% (over 3,500 DSPs per year). 
• The Commonwealth of Pennsylvania is the sole funder of the wages of DSPs. The state budget has grown by over $6.3 billion since 2009, but the rate increases and DSP wages have flatlined. 

This crisis is nationwide.

VOR comments to CMS on the true costs of implementing the 2014 federal rule on HCBS

VOR is a national organization that supports a full array of services and settings to serve the diverse needs and preferences of people with developmental and intellectual disabilities. This is from pages 3 to 4 of VOR's response to a request for information from the federal agency, CMS, that regulates Medicare and Medicaid. The comments are dated 1/9/17. 

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...CMS needs to assess the true cost of implementing the 2014 HCBS [Home and Community-Based Services] rule. Complying with the rule is proving costly for the states, resulting in states cutting services and displacing vulnerable individuals from their homes. The closing of congregate settings [those serving more than 3 or 4 people with disabilities together] to comply with the new rule and so-called Olmstead enforcement activities have further harmed disability service systems in states by increasing wait lists and forcing people into inappropriate settings they did not choose, settings that are often unprepared to ensure their health and safety. The whole system of care is being undermined in the name of inclusion, integration and Olmstead enforcement, contrary to the plain language and intent of Olmstead as a vehicle for choice.

The expectation of savings from moving individuals from congregate care (ICF’s/IID) [Intermediate Care Facilities for IID] to smaller licensed group homes, or from small group homes to unlicensed community settings, is unlikely to be realized unless there is also a reduction in the quality or quantity of services needed by individuals with I/DD. These expectations are often based on faulty cost comparisons, which fail to account for the full array of public benefits accessed by individuals receiving HCBS care. Unsustainable costs have resulted in even longer waiting lists and tragic outcomes. [See VOR’s “Widespread Abuse, Neglect and Death" in Small Settings Serving People with Intellectual Disabilities”, 2016]

Often, the increase in HCBS comes at the expense of ICF/IID residents who lose their homes due to federally funded litigation. Happily situated ICF residents pressured or forced to leave ICFs through litigation receive HCBS placements ahead of individuals who have been waitlisted for years. The policy of shutting down successful residential placements is even more absurd when you consider many of the wait-listed individuals may in fact prefer and can benefit from HCBS settings. These individuals are forced to wait longer now that former ICF/IID residents move to the front of the line.

The Case for Inclusion, annual reports produced by UCP on how well state Medicaid programs serve people with I/DD, shows that with the increase in the use of Home and Community-Based Services over the last decade, waiting lists for residential and other services have increased from 74,000 in 2005 to 350,000 in 2016, an increase of nearly 400%. At the very least, it can be said that increased use of HCBS has not resulted in fewer people waiting for services.

New York: The NY Assembly Minority Task Force Report on Developmental Disabilities

The New York state Assembly, the lower house of the New York Legislature, is dominated by a 62 vote supermajority of Democrats. The Assembly Minority (Republican) Task Force on Protecting the Rights of People with Developmental Disabilities has recently issued a report based on the testimony of parents, people with disabilities, advocates, service providers and other interested parties on services for people with developmental disabilities in New York state. Forums were held at eleven sites throughout the state, attracting crowds of 25 to 85 people who came to have their say on problems they had experienced with the service system for people with DD.

The task force heard a diversity of opinions representing people with varying degrees of disability and need for services. The name of the report is C.A.R.E.S. (Championing Aid, Rights, Equality, and Services: a Report on the Olmstead Decision & Its Impact on the State’s Developmental Disability Community). A number of complaints centered on the state’s misinterpretation of the 1999 U.S. Supreme Court Olmstead decision. Many families and advocates for choice have been criticizing the use of Olmstead as a weapon to close programs and services that are considered “too institutional” by some, but are nevertheless highly valued and needed by a significant portion of the DD population and their families. The C.A.R.E.S. report addresses this issue at both the state and the federal level and calls for the state to revaluate its interpretation.

The recommendations that come out of the report are a logical and compassionate response to the problems that are heard again and again in many areas of the country: preserve, restore, and expand the services that people with DD want and need, compensate service providers with the funds they need to provide the best possible services, pay direct care workers enough to maintain a high quality and sustainable work force, and protect the rights of all people with DD to appropriate levels of service based on their needs and preferences.

I question why these recommendations come only from the minority in the legislature and why they are not at least bipartisan, if not universally supported by legislators who have surely heard from some of their constituents about the growing problems within the DD system of services. 

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The following is the Executive Summary from the C.A.R.E.S. report: 

EXECUTIVE SUMMARY

The Assembly Minority Task Force on Protecting the Rights of People with Developmental Disabilities was formed in response to numerous calls and complaints from constituents to members of the Assembly Minority Conference concerning the announcement by the governor that sheltered workshops would be closed in order to bring New York State into compliance with the federal Department of Justice’s interpretation of the U.S. Supreme Court’s Olmstead Decision. The term sheltered workshop refers to an organization or environment (typically a business) that employs people with disabilities in a “sheltered” environment. The overarching decision required states to place persons with mental disabilities in community settings rather than in institutions. However, people have argued, there were several factors to the requirement of moving individuals to community settings that state governments, including New York, have overlooked. With this in mind, the Assembly Minority Conference conducted a series of statewide hearings to gather information from parents, service providers and individuals with developmental disabilities to determine if there are policy changes that can be made or new laws that can be enacted to help provide for people with developmental disabilities in the most caring and cost-effective manner possible.

Among those with firsthand experience, the belief that there has been a misinterpretation of the Olmstead Decision has caused a ripple effect throughout the developmental disability community as it pertains to the integration of employment and how individuals will find and get to employment outside of sheltered workshops. To meet the state’s requirements, sheltered workshops have changed their business models to incorporate non-disabled individuals into the workforce. This change has raised questions as to what happens to individuals in the developmental disability community who worked in these former sheltered workshops who can no longer perform their jobs in these facilities.

The deinstitutionalization requirements of the Olmstead Decision also impact housing for the developmental disability community. While many individuals live with their families, parents are concerned with what will happen to their children when they can no longer care for them or they should die. While New York State’s Office for People with Developmental Disabilities (OPWDD) conducted a survey of individuals who contacted the agency with concerns about housing for their family members, their findings do not seem to help those who are actually looking for housing. A prominent finding in the “Residential Request List” (RRL) report by OPWDD concludes that there is enough housing for the 11,000 who want housing statewide, but this may not benefit each individual locally.

Numerous issues were raised during the Task Force’s forums. This report outlines some of the major problems that the developmental disability community is dealing with, including jobs and housing; services for families; and salaries and compensation for those who work with individuals with disabilities.

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Recommendations

This is a summary of the recommendations of the Minority Task Force from the Website of Assemblyman Clifford Crouch, Chairman of the task force:

• Requiring the Attorney General to reevaluate the state’s interpretation of the Olmstead Decision. 
• Working with the federal government to prevent the state from losing funding as a result of the interpretation of the Olmstead Decision. 
• Create post-schooling training programs for individuals with developmental disabilities to better prepare them for employment. 
• Create incentives for sheltered workshops to hire individuals without developmental disabilities. 
• Create a Bill of Rights for Individuals with Developmental Disabilities to outline in statute their rights. 
• Fully fund the increase in minimum wage for direct care workers employed by non-profit providers. 
• Create a commission to study and report on what wage levels would need to be in order to recruit and retain an adequate number of qualified direct care workers in the various regions of the state, with a special focus on making sure that staffing levels are adequate for the transition to integrated employment. 

Crouch noted that New York State’s minimum wage is set to increase to $15 an hour in most parts of the state by 2021. The task force was concerned about the repercussions this could have on the developmental disability community’s direct care workforce.

Washtenaw County Elections and Elected Officials Part 2

For a complete list of all elected officials from Washtenaw County, see this from the Ann Arbor League of Women Voters. Also see Part 1.

WASHTENAW COUNTY OFFICIALS
Washtenaw County Administration Building
200 N. Main Street, P.O. Box 8645
Ann Arbor, MI 48107-8645, Phone: (734) 222-6850
Website: www.ewashtenaw.org

ANN ARBOR BOARD OF EDUCATION
2555 S. State Street, Ann Arbor 48104
Phone: (734) 994-2232, Website: www.a2schools.org/
Trustees Term Expires June

SUSAN BASKETT, Vice-President Phone: (734) 478-3338 2018
JEFFREY GAYNOR, Secretary Phone: (734) 277-2305 2018
JESSICA KELLY, Trustee Phone: (734) 707-7827 2018
SIMONE LIGHTFOOT, Parliamentarian Phone: (313) 585-1052 2020
PATRICIA MANLEY, Trustee Phone: (734) 971-1898 2018
HARMONY MITCHELL, Treasurer Phone: (734) 929-2335 2020
CHRISTINE STEAD, President Phone: (734) 717-2493 2018

YPSILANTI BOARD OF EDUCATION
1885 Packard Road, Ypsilanti 48197
Phone: (734) 221-1200, Website: www.ycschools.us
Trustees Terms Vary, Expire June 

ELLEN CHAMPAGNE, Secretary Email: echampagne@ycschools.us 2018
CELESTE HAWKINS, Vice-President Email: chawkins@ycschools.us 2018
SHARON IRVINE, Trustee Email: sirvine@ycschools.us 2018
SHARON LEE, President Email: slee@ycschools.us 2022
BRENDA MEADOWS, Trustee Email: bmeadows@ycschools.us 2020
MEREDITH SCHINDLER, Treasurer Email: mschindler@ycschools.us 2022
MARIA SHELER-EDWARDS, Trustee Email: msheleredwards@ycschools.us 2020

STATE BOARD OF EDUCATION
P.O. Box 30008, Lansing, MI 48909
Phone: (517) 373-3900, Fax: (517) 335-4575
Website: www.michigan.gov/mde
8-Year Term Expires January

MICHELLE FECTEAU (D) Secretary, Detroit 2021
TOM MCMILLIN (R) Treasurer, Detroit 2025
PAMELA PUGH (D) Detroit 2023
LUPE RAMOS-MONTIGNY (D) Grand Rapids 2021
NIKKI SNYDER (R) NASBE Delegate, Lansing 2025
CASANDRA E. ULBRICH (D) Co-President, Rochester Hills 2023
EILEEN WEISER (R) Ann Arbor 2019
RICHARD ZEILE (R) Co-President, Dearborn 2019

WASHTENAW INTERMEDIATE
AND HIGH POINT SCHOOL DISTRICT TRUSTEES
1819 S. Wagner Road, P. O. Box 1406, Ann Arbor 48106-1406
Phone: (734) 994-8100 ext.1300, Fax 994-2203
Email: wisdboard@washtenawwisd.org 

Website: www.washtenawisd.org
6-Year Term Expires June

DIANE HOCKETT, President Phone: (734) 662-8382 2019
GREGORY PEOPLES, Secretary Phone: (734) 487-5582 2017
MARY JANE TRAMONTIN, Vice-President Phone: (734) 761-2729 2019
THERESA SAUNDERS, Treasurer Phone: Not Available 2021
MARY JO CALLAN, Trustee Phone: Not Available 2017

WASHTENAW COUNTY TRIAL COURT
22nd Judicial Circuit
101 E. Huron Street, Ann Arbor 48107-8645
General information: (734) 222-3095, Scheduling: (734) 222-3270
Website: www.washtenawtrialcourt.org/
6-Year Term Expires January

ARCHIE C. BROWN, Chief Judge Phone: (734) 222-3376 2023
PATRICK CONLIN Phone: (734) 222-3399 2021
TIMOTHY P. CONNORS Phone: (734) 222-3361 2019
CAROL KUHNKE Phone: (734) 222-3386 2019
DAVID S. SWARTZ Phone: (734) 222-3392 2021

PROBATE COURT JUDGES
Website: www.washtenawtrialcourt.org/probate
6-Year Term Expires January

DARLENE A. O’BRIEN Phone: (734) 222-3006 2019
JULIA OWDZIEJ Phone: (734) 222-3351 2021

VOTER INFORMATION

REGISTERING TO VOTE

To register to vote, you must swear or affirm that you:
(1) are a citizen of the United States;
(2) will be at least 18 years old by the next election;
(3) are a resident of Michigan and the city or township where you are applying to register to vote.

NOTE: Driver's license address and registration address must be the same.

You may register at:
(a) a city, township, or county clerk's office,
(b) any Secretary of State office,
(c) the following State agencies offer voter registration services to their clients: Department of Human Services, the Department of Community Health and the Department of Career Development. Military recruitment centers also provide voter registration services. 

If you move within a city or township, you must file a change of address with the clerk. If you move to another city or township within the state, you must re-register with the clerk in your new city or township of residence.

ABSENTEE VOTING

Absentee Voter Ballots must be requested in writing. For detailed instructions phone your clerk. Registered voters may apply to vote by absentee voter ballot if they:

(1) are 60 years of age or older, or
(2) will be absent from the city (or township) on election day during voting hours; or
(3) are unable to vote without assistance at the polls, or
(4) are unable to attend the polls due to religious tenets; or
(5) are confined to jail awaiting arraignment or trial; or
(6) are appointed to work as an election inspector in a precinct outside of your precinct of residence.

POLITICAL PARTY INFORMATION

Green Party of Michigan: (313) 815-2025
Washtenaw County Democratic Party: (734) 340-2744
Washtenaw County Republican Party: (734) 996-9467

LEAGUE OF WOMEN VOTERS of the ANN ARBOR AREA

Website: www.lwvannarbor.org
Mailing Address: P. O. Box 3832, Ann Arbor, MI 48106-3832

Washtenaw County Elections and Elected Officials Part 1

Too soon, you say? Before you know it, the next election will be upon us and we need to prepare. 

This information is from the Ann Arbor League of Women Voters.

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ELECTION DATES 

Special Election (if held) Tuesday, May 2, 2017 
Primary Election Tuesday, August 8, 2017 
General Election Tuesday, November 7, 2017 
Special Election (if held) Tuesday, May 1, 2018 
Primary Election Tuesday, August 7, 2018 
General/School Board Elections Tuesday, November 6, 2018

FEDERAL OFFICIALS 

President 4-Year Term Expires January 20, 2021 DONALD J. TRUMP (R) 

White House Comments: (202) 456-1111 

1600 Pennsylvania Avenue Phone: (202) 456-1414 

Washington, DC 20500 

Email: president@whitehouse.gov 

Vice President 4-Year Term Expires January 20, 2021 

MICHAEL R. PENCE (R) 

Eisenhower EOB Phone: (202) 395-5895 

1650 Pennsylvania Av. NW 

Washington, DC 20502 

Email: vice.pres@whitehouse.gov 

U.S. Senators 6-Year Term Expires January 1 

GARY PETERS (D) 2021 

724 Hart Senate Office Bldg. Phone: (202) 224-6221 

Washington, DC 20510 Fax: (202) 224-1388 

Detroit, MI 48226-2576 Phone: (313) 226-6020 

Website: www.peters.senate.gov Toll-Free 844-506-7420 

DEBBIE STABENOW (D) 2019 

731 Hart Senate Office Bldg. Phone: (202) 224-4822 

Washington, DC 20510 Fax: (202) 228-0325 

221 W. Lake Lansing Rd. Ste.100 Phone: (517)203-1760 

East Lansing, MI 48823 

Website: www.stabenow.senate.gov 

U.S. House of Representatives 

2-Year Term Expires January 1 

District 7

TIM WALBERG (R) 2019 

2436 Rayburn House Ofc Bdg. Phone: (202) 225-6276 

Washington, DC 20515 Fax: (202) 225-6281 

401 W. Michigan Ave. Phone: (517) 780-9075 

Jackson, MI 49201 Fax: (517) 780-9081 

Website: www.walberg.house.gov 

District 8 

MIKE BISHOP (R) 2019 

428 Cannon House Office Bldg. Phone: (202) 225-4872 

Washington, DC 20515 Fax: (202) 225-5820 

711 E. Grand River, Ste. A Phone: (810) 227-8600 

Brighton, MI 48116 Fax: (810) 227-8628 

Website: www.mikebishop.house.gov 

District 12 

DEBBIE DINGELL (D) 2019 

116 Cannon House Office Bldg. Phone: (202) 225-4071 

Washington, DC 20515 Fax: (202) 226-0371 

301 W. Michigan Ave, Ste. 400 Phone: (734) 481-1100 

Ypsilanti, MI 48197 

Website: www.debbiedingell.house.gov

STATE OFFICIALS 

For information, phone: (517) 373-3400 

4-Year Term Expires January 1, 2019 

Governor 

RICK SNYDER (R) Phone: (517) 373-3400 

State Capitol Phone: (517) 335-7858 

P.O. Box 30013 Fax: (517) 335-6863 

Lansing, MI 48909 

Email: ricksnyder@michigan.gov 

Website: www.michigan.gov/snyder 

Lieutenant Governor 

BRIAN CALLEY (R) 

State Capitol Phone: (517) 373-3400 

P.O. Box 30013 

Email: brian.calley@michigan.gov 

Lansing, MI 48909 

Website: www.michigan.gov/calley 

Secretary of State 

RUTH JOHNSON (R) Phone: (888) 767-6424 

Michigan Department of State Phone: (517) 373-2510 

430 West Allegan St., 4th FL Fax: (517) 335-0727 

Lansing, MI 48918 

Website: www.michigan.gov/sos 

Email: secretary@michigan.gov

Attorney General 

BILL SCHUETTE (R) Phone: (517) 373-1110 

P. O. Box 30212 Fax: (517) 373-3042 

Lansing, MI 48909 

Website: www.michigan.gov/ag 

Email: miag@michigan.gov 

State Senators 4-Year Term Expires January 1, 2019 

P. O. Box 30036, Lansing, MI 48909-7536 

Website: www.senate.mi.gov 

District Number 

17 DALE ZORN (R), Washtenaw County 

Phone: (517) 373-3543 

Fax: (517) 373-0927 

Email: sendzorn@senate.mi.gov 

Website: www.senatordalezorn.com 

18 REBEKAH WARREN (D), Ann Arbor 

Phone: (517) 373-2406 

Fax: (517) 373-5679 

Email: senrwarren@senate.mi.gov 

Website: www.senate.mi.gov/warren 

State House of Representatives 2-Year Term Expires January 1, 2019 

P.O. Box 30014, Lansing, MI 48909-7514 

Website: www.house.mi.gov 

District Number 

52 DONNA LASINSKI (D), W. Washtenaw 

Phone: (517) 373-0828 

Email: DonnaLasinski@house.mi.gov 

53 YOUSEF RABHI (D), Ann Arbor 

Phone: (517) 373-2577 

Email: YousefRabhi@house.mi.gov 

54 RONNIE PETERSON (D), E. Washtenaw 

Phone: (517) 373-1771 

Email: RonniePeterson@house.mi.gov 

55 ADAM ZEMKE (D) W. Washtenaw/Monroe 

Phone: (517) 373-1792 Toll-Free (855) 936-5355 

Email: adamzemke@house.mi.gov 

Limiting choice and discrimination against disabled: "Legal Vulnerabilities" of the 2014 settings rule Part 4

Families intent on challenging a federal rule that restricts where their DD family members can live while they receive Medicaid-funded services, have found help In the form of a legal memorandum from the law firm of Covington & Burling LLP in Washington, D.C.: “Legal Vulnerabilities of CMS’s Regulation of Home and Community-Based ’Settings’”. 

The legal memo focuses specifically on the effect the 2014 Home and Community-Based Services (HCBS) rule has on individuals using 1915(c) Medicaid Waivers to pay for services in settings other than Medicaid-funded institutions - i.e. Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID), skilled nursing facilities, or mental hospitals. The legal analysis should also be helpful to anyone challenging restrictions on choice of congregate work settings, such as sheltered workshops, or specially designed day and other programs for people with disabilities. Read the Legal Vulnerabilities memo for references to Medicaid law, disability rights law, and relevant court cases.

Discrimination,The ADA, and Olmstead

Title II of the Americans with Disabilities Act (ADA) prohibits discrimination on the basis of disability in State and local government services. Federal policy on the provision of services and benefits to people with disabilities is far more flexible and less restrictive than many advocates of full community inclusion are willing to admit. There are no mandates that prohibit particular settings or services for individuals with disabilities in general, and the needs and choice of the individual are a primary consideration. See What does the ADA “Integration Mandate” really mean?

In short, the ADA does not restrict individuals from receiving services in specialized congregate settings for people with disabilities nor does it allow public entities to prevent access to services and benefits available to all. The 1999 U.S. Supreme Court Olmstead decision affirms this interpretation of the ADA and protections and choice for people in institutional settings.

Innovative intentional communities have become a reality in many areas where individuals with disabilities choose to live with others with disabilities for mutual support and to share resources. They have been stymied, however, by restrictions in the HCBS Settings rule. The rule not only regulates Medicaid-funded services that people receive, but it attempts to restrict the choice of settings where the person receiving services may live, even though Medicaid law for HCBS is designed to promote choice in living situations for people with disabilities. The preferences of the federal regulatory agency CMS and that of disability advocates who oppose all congregate settings (settings where more than 3 or 4 people with disabilities live or receive services), have been allowed to outweigh the preferences of individuals with disabilities and their families.

Excerpts from the Legal Vulnerabilities Memo

"The Regulations and Sub-Regulatory Guidance Are Discriminatory" 

[Sub-regulatory guidance includes clarifications on implementation of the settings rule issued by CMS since 2014]

…”The Americans with Disabilities Act (ADA) and the Fair Housing Act (FHA) each protect individuals from discrimination on the basis of their disability. States that implement CMS regulations and guidance in a manner that restricts the opportunity for individuals with disabilities to live in intentional communities may be violating both the ADA and FHA.

“Courts have long recognized two core principles behind the ADA and FHA:

1. Provide clear, strong, consistent and enforceable standards addressing discrimination against individuals with disabilities; and

2. Afford individuals with disabilities an equal opportunity to live in the dwelling of their choice.

“While CMS’s regulations claim to be supporting the goal of non-discrimination, its treatment of disability-specific settings in sub-regulatory guidance is not consistent with these two core principles. It could result in individuals with disabilities being denied services based on their decision to live with others with disabilities, or result in landlords capping the number of disabled residents who live in their housing complexes..”

Legal Standard

...“There are three ways to make a showing of discrimination under the ADA and FHA:

1) by proving discrimination in the form of disparate treatment or intentional discrimination;
2) by demonstrating that a law, practice, or policy has a disparate impact on individuals with disabilities; or
3) by demonstrating that the defendant failed to make reasonable accommodations in rules, policies, or practices so as to afford people with disabilities equal opportunities, including an equal opportunity to live in the home of their choice.”

• Policies Restricting Disability-Specific Intentional Communities Constitute Discrimination Under the ADA and FHA

"CMS’s de facto prohibition on Medicaid services to individuals who live in disability-specific communities violates the ADA and FHA by explicitly treating individuals with disabilities differently than individuals without..."
[footnote: The ADA provides that “no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity.” ...The FHA prohibits discrimination “against any person in the terms, conditions, or privileges of the sale or rental of a dwelling, or in the provision of services of facilities in connection with such dwelling because of a handicap.”]

..."Even local policies that seem 'neutral' on their face have been rejected by both Congress and the courts, which have recognized that “neutral” policies aimed at restricting 'congregate living arrangements' disproportionately affect disabled individuals, who are less likely to be able to live in the community without assistance, who are less likely to have families that are able to care for them in the community, and who often need to live in congregate settings to receive services efficiently."

..."The fact that the settings rule was intended to promote integration and prevent segregation is not a defense to claims of discrimination."

…“benign intentions on the part of lawmakers cannot justify laws which discriminate against protected groups.”...

"...the ADA focuses on individual choice and independence, and federal and state regulations limiting those choices based on an individual’s disability status would not comport with the intent of the ADA.”...

..."For individuals who are dependent on Medicaid-funded services, the alternative to disability-specific housing may not be a more integrated setting, but a move to an institutional setting, contrary to the intent of the ADA and Olmstead v. LC."...

• A Failure to Provide a Reasonable Exceptions Process to Overcome a Presumption of “Institutionality” Constitutes Discrimination under the ADA and FHA

"The Court held that it [is] unlawful discrimination to 'subject individuals to the ‘rigors of the governmental or administrative process’ . . . with an intent to burden, hinder, or punish them by reason of their membership in a protected class'...

"To the extent the heightened scrutiny process is unduly burdensome, unreasonable, or not effective in allowing appropriate settings to be deemed compliant with CMS’s settings rule, it fails to meet the requirements for a reasonable accommodation."

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For more information, see:

Americans with Disabilities Act regulations on general prohibitions against discrimination

Disability Rights in Housing

HCBS Advocacy

Coalition for Community Choice

The Olmstead Decision Has Been Misinterpreted

Federal rule on community-based settings is “arbitrary and capricious”: “Legal Vulnerabilities” Part 3

A legal analysis, dated 1/17/17, of the 2014 federal rule on Home and Community-Based settings for people with disabilities describes in detail how the rule may be vulnerable to a legal challenge. See also “Legal Vulnerabilities” Part 1 & Part 2. The rule was promulgated by the Centers for Medicare and Medicaid Services (CMS), the federal agency that regulates Medicare and Medicaid. For more information, see HCBS Advocacy.

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Before the 2014 HCBS settings rule was made final, there were proposals to exclude disability-specific housing as an acceptable setting for receiving Medicaid-funded Home and Community-Based Services (HCBS). There was significant opposition to this proposal on the basis that it eliminated choice for Medicaid waiver recipients. [In Michigan, the Medicaid Waiver for DD is called the Habilitation Supports Waiver (HSW)]. Commenters said that individuals with disabilities should be able to choose disability-specific housing if it meets their needs and that eliminating this option would exacerbate a housing market already in crisis. Furthermore, the disability-specific settings being considered are not funded as institutions under Medicaid law.

According the 1/17/17 legal analysis, “CMS responded to these numerous comments by stating that it was removing the categorical treatment of ‘disability-specific housing’ and instead providing that ‘any other setting that has the effect of isolating individuals receiving Medicaid HCBS from the broader community of individuals not receiving Medicaid HCBS’ and requiring an isolating setting to undergo ‘heightened scrutiny’ to determine if it has the ‘qualities of an institution.’..”

The way this was to be implemented by CMS, however, effectively made it extremely difficult to receive approval for disability-specific housing by the state and the U.S. Department of Health and Human Services for settings that were considered to be too “institutional”.

Excerpts from the MEMO:

“Even if Congress Delegated Authority to Define Settings in Regulation, the Treatment of Disability-Specific Housing is Arbitrary and Capricious"

[Note: post-regulatory and sub-regulatory guidance refers to clarifications issued by CMS after the settings rule was finalized in 2014.]

…”In post-regulatory guidance, CMS announced that settings designed for people with disabilities, as well as gated or secure communities, are to be considered a ‘setting that has the effect of isolating individuals’ and therefore automatically subject to heightened scrutiny, regardless of the specific characteristics of the setting. Specifically, CMS stated that settings ‘designed specifically for people with disabilities,’ and settings where the residents 'are primarily or exclusively people with disabilities and on-site staff provides many services to them,’ are ‘isolating.'"

…”Although technically a 'setting that isolates' may still survive 'heightened scrutiny,' CMS’s process for such review makes it very unlikely that states will be willing to make the application. Once heightened scrutiny is triggered, the rules place a tremendous burden on state regulators to petition CMS to permit continued reimbursement for services provided to individuals in the disability-specific housing, including by collecting and submitting voluminous documentation, conducting a site visit, soliciting client surveys, obtaining photographs, establishing public transportation routes, etc. Not surprisingly, the path of least resistance for many states will be to prohibit reimbursement for disability-specific settings, even if they would have been a preferred choice for many waiver recipients, and even if the settings exhibit the qualities of home- and community-based settings and not institutions. Further, CMS has effectively ensured that no further disability-specific housing complexes will receive financing to be built in the future, because of its guidance expressing skepticism that individuals living in such a complex will qualify for waiver services.” [Emphasis added]

…”Even if CMS has the authority to regulate settings, we believe its actions effectively eliminating disability-specific housing as a choice for individuals desiring Medicaid-funded services are arbitrary and capricious.”

• CMS’s Treatment of Disability-Specific Housing is Inconsistent with the Text of the Regulation

…”While an agency is generally entitled to substantial deference in interpreting its own ambiguous regulations, deference is unwarranted when 'the agency’s interpretation ‘does not reflect the agency’s fair and considered judgment on the matter in question.’“

“...there was significant opposition to CMS’s regulatory proposal to categorically deny funding for services to individuals living in disability-specific settings…After careful consideration of these comments in the rulemaking process, CMS eliminated the categorical treatment of disability-specific settings. In the months that followed, however, CMS effectively reversed that decision through sub-regulatory guidance, without any indication that it carefully considered facts relating to disability-specific housing or the implications of denying Section 1915(c) services to individuals who live in that type of housing. For example, in the sub-regulatory guidance, CMS did not cite any facts on which it bases its conclusion that disability-specific housing has 'the effect of isolating.'"

“...CMS’s position is inconsistent with the regulations’ instructions that heightened scrutiny shall apply only to settings that actually 'have the effect of isolating.' Rather than having state regulators review whether a particular setting actually has such an effect on a case-by-case basis, CMS’s post-regulatory guidance sweeps broadly, targeting particular types of residential settings that CMS believes 'often,' 'typically,' 'may,' and 'generally' may have such an effect. Even disability-specific settings that do not have the 'typical' and 'general' characteristics that CMS has identified as a concern are subject to the heavy burdens of heightened scrutiny."

“By applying the regulation to broad residential categories based on characteristics that CMS believes (without citing any evidence) 'typically' and 'often' isolate, CMS recreates the categorical approach to disability-specific housing that the final rule expressly rejected in response to public opposition. If CMS had intended for disability-specific housing to be presumed to be isolating – as the post-regulatory guidance indicates – it would have included them in the list of settings that are presumed to have 'qualities of an institution.'"

"…CMS’s position is inconsistent with the regulation’s treatment of 'integration' and 'isolation.' CMS’s regulation does not say that heightened scrutiny is triggered when an individual with a disability is not 'integrated into the broader community,' but rather when a setting isolates 'individuals receiving Medicaid HCBS from the broader community of individuals not receiving Medicaid HCBS.' In other words,CMS’s regulation focuses not on the disability only, but on the payor for services (Medicaid). The post-regulatory guidance appears to assume that all individuals living in disability-specific housing are 'receiving Medicaid HCBS,' and all individuals in the 'broader community' are not receiving HCBS. But not all individuals with disabilities receive Medicaid, and many disability-specific housing complexes will continue to house a majority of private-pay residents who do not receive Medicaid-funded services."

• CMS’s Treatment of Disability-Specific Housing Is Not Supported By the Administrative Record

…”CMS’s post-regulatory guidance completely disregards the comments on the proposed rules and the regulatory changes CMS made in response to those changes. The comments focused on the fact that including disability-specific housing would eliminate consumer choice and be an unwarranted restriction of housing options. CMS’s regulations purport to respect such choice. But CMS’s post-regulatory guidance eliminates that choice by instructing states to apply 'heightened scrutiny' that, in effect, is likely to be the equivalent of an absolute prohibition, because it creates a tremendous amount of work for states seeking to qualify individuals."

"…the standard should not be whether those settings satisfy CMS’s preference as to where individuals should be living, but rather whether it is the preference of the individual receiving services.” [Emphasis added]

"Legal Vulnerabilities" of the 2014 HCBS Settings Rule: Part 2

In a previous post, I included the executive summary of a memo from the the law firm of Covington & Burling LLP in Washington, D.C. - “Legal Vulnerabilities of CMS’s Regulation of Home and Community-Based ’Settings’" This memo lays out in detail how the 2014 HCBS Settings rule is susceptible to a legal challenge. The Rule was written by the Centers for Medicare and Medicaid Services (CMS), the federal agency that regulates Medicaid funding for Home and Community-Based Services.

This is a PDF version of the memo that has been highlighted by the Coalition for Community Choice.

Read the Memo to see all citations to Medicaid law and relevant court cases.

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Medicaid law on 1915(c) Medicaid waivers for Home and Community-Based Services (HCBS), excludes certain settings from HCBS funding. Those settings are specifically named: Intermediate Care Facilities for the Mentally Retarded (ICF/MR) [currently referred to as ICFs for Individuals with Intellectual Disabilities (ICF/IID)], nursing facilities, and hospitals. These settings provide an “institutional” level of care that is funded and licensed by Medicaid separately from HCBS. HCBS are an alternative to this level of care, depending on the choice of the individual. HCBS pays for services for the individual, but does not pay for “room and board” (with limited exceptions).

Excerpts from the MEMO:

Congress Did Not Give CMS the Authority to Exclude Settings That Are Not Excluded By the Statute

"…Courts must 'examine the nature and scope of the authority granted by Congress to the agency,'... If Congress did not delegate authority to the agency, either expressly or by the use of ambiguous terms requiring interpretation, then the agency’s regulations exceed agency authority and are invalid. “...

“Section 1915(c), however, does not require that individuals receiving HCBS be living in any particular type of ‘setting,’ and ‘where Congress includes particular language in one section of a statute but omits it in another . . . , it is generally presumed that Congress acts intentionally and purposely in the disparate inclusion or exclusion.’…"

[Services vs. Settings]

"Presumably, in regulating home- and community-based settings, CMS is relying on its authority to define home- and community-based services. The statute directly gives the Secretary the authority to define services, by repeated references to such services ‘as the Secretary shall approve.’ However, the settings rule does not define the services provided under the waiver, but instead identifies (and limits) the individuals who may receive Medicaid-funded service, based on where they live. In fact, in the ANPRM [a 2009 “Advanced Notice of Proposed Rule Making”], CMS expressly acknowledged that it tried to regulate settings through the definition of HCB services, and was unsuccessful. "

…”The statute does not support an inference that Congress intended to delegate authority to CMS to regulate an individual’s living situation (other than through the three excluded institutions).  That is because Congress largely excludes ‘room and board’ from the definition of home and community based services, with a limited exception for costs attributable to an unrelated personal caregiver who is residing in the same household.  Yet, limiting Section 1915(c) services to individuals living in certain settings directly regulates ‘room and board.’…."

“Finally, CMS’s regulation of settings is inconsistent with Section 1915(c)’s goal to promote individual choice, see § 1915(c)(2)(C)…."

 “…Congress did not delegate authority to the Secretary to limit the individuals receiving HCBS to those living in settings approved by the CMS.”

From the Coalition for Community Choice: Read about the Legal implications of the HCB Settings Rule and Act Now

ACTION ALERT

Greetings Coalition for Community Choice:

As you know, the CCC came to be because we oppose CMS's position on disability-specific settings. Here is an exciting resource with a call-to-action to advance our work: 

REVIEW THIS: To analyze the legal implications of CMS's HCBS Final Rule, several CCC organizations hired Caroline Brown and Phil Peisch at the prestigious Covington & Burling. We are grateful to those who financially made this work possible - particularly, Micki and Lanny Edelsohn and Mark Jackson who initiated this effort and Ashley Kim who ran with it! Please review, use, and share this important legal memo.

ACT NOW: Covington & Burling recently shared their findings with the CMS transition team for the Trump Administration. The transition team would like to know if there are any advocacy groups or not-for-profits that oppose CMS’s current approach to disability-specific housing. Click this link if your organization would like to be listed as an organization that opposes CMS's current approach to disability-specific housing. If you have questions, contact Ashley Kim ASAP. Her contact info is (310) 889-8800 or akim@villadevida.org

In the words of Ashley, “Let's do this!”

Desiree Kameka
National Coordinator, CCC
Madison House Autism Foundation 

The Home and Community-Based Settings (HCBS) Rule and "Legal Vulnerabilities": Part 1

To learn more about the 2014 HCBS rule, see the HCBS Advocacy website.

The worst thing about the 2014 Home and Community Based Services settings rule is that it allows a federal agency to substitute its opinion of where individuals with developmental disabilities should live for the judgment of the individuals themselves and their families. The Centers for Medicare and Medicaid Services (CMS) promulgated a rule that sets arbitrary limits on the settings where individuals with DD can receive services. If you or your family member fits neatly into the categories of living arrangements that CMS prefers and approves of, then the HCBS settings rule may not be an obstacle for you and may actually help. If you or your family member need or prefer to live in a situation different from what the rule allows, then you may have to settle for living in a setting not of your choosing that does not meet your needs and where the only alternative may be for you to forego HCBS Medicaid funding. For those who are satisfied with the choices the rule allows, who is to say what you need and prefer today may be different from what you need and prefer tomorrow?

In her opinion piece, "The Federal Government’s Quiet War Against Adults with Autism" from 4/9/2016, Jill Escher says it best:

“One of the most troubling aspects of the new CMS rule [is] its necessary tool of overt disability discrimination. In an unprecedented move, the government is defining where a minority (here, people with developmental disabilities) can live before they can get needed social services, and promoting the idea of maximum quotas of units available to people with developmental disabilities, even in private residences. How would a senior citizen feel if told he could not receive public assistance if the government felt he lived with too many other elderly people? Should we shut off low-income housing vouchers to African Americans if more than 25% of a property is rented to people of color? Are people with Alzheimer's being told they cannot live with ‘too many’ other people with the condition? On top of the bureaucratic shenanigans, we are also talking about rank discrimination.”

Finally, families intent on challenging the limits placed on their DD family members by the 2014 rule have received some help In the form of an eleven-page legal memorandum from the law firm of Covington & Burling LLP in Washington, D.C.,  “Legal Vulnerabilities of CMS’s Regulation of Home and Community-Based ’Settings’”. It is a fascinating document packed with information about the legal underpinnings of the system of care for people covered by so-called 1915(c) Medicaid Waivers. These waivers allow states to provide HCBS to individuals with severe disabilities who “but for” the waiver services would require the level of care provided by a hospital, nursing facility (NF), or intermediate care facility for individuals with intellectual disabilities (ICF/IID).

I hope to cover other parts of the memorandum in the future, but for now, here is the Executive Summary:

We have been asked to identify potential legal challenges to the regulations and subsequent guidance documents issued by the Department of Health and Human Services’ (HHS) Centers for Medicare & Medicaid Services (CMS) that redefine the “settings” in which individuals may live to receive certain Medicaid home- or community-based services (HCBS). Specifically, you have asked us to evaluate whether CMS can lawfully exclude individuals living in “intentional communities” designed to support individuals with disabilities from receiving Medicaid HCBS services.

We believe that both the regulations and subsequent CMS guidance can be challenged as exceeding CMS’s authority. The effect of the regulations is to limit the choices of living situations for individuals with disabilities, and to replace the preferences of individuals, families and guardians with the preferences of CMS as to which setting best suits the needs of a particular individual.

As set forth below, we believe that CMS has exceeded its statutory authority in the manner in which it has regulated HCBS settings: 

• First, Congress never intended for the Secretary to exclude settings that are not excluded by the statute. The statute itself excludes only services provided in hospitals, nursing facilities, and intermediate care facilities for individuals with intellectual disabilities (ICF/IIDs) from reimbursement under the HCBS waiver programs. Nothing in the statute gives the Secretary authority to create additional exclusions. The statute prohibits reimbursement for “room and board,” yet the new regulations and guidance extensively regulate a waiver enrollee’s living situation. 
• Second, CMS’s policy to effectively exclude individuals living in “intentional communities” is inconsistent with the text of the regulation and with the comments to the proposed regulation related to consumer choice. 
• Finally, even assuming that the regulations can be upheld as validly promulgated and consistent with the statute, CMS’s elimination of choice for waiver enrollees is in conflict with the Americans with Disabilities Act (ADA) and the Fair Housing Act. 

For all of these reasons, there is a strong basis for challenging CMS’s settings regulations and policies.