PART 4. How Independent Housing is Funded
In this section we describe public benefits that are available to people with low incomes and/or to people with a disability, but not specifically I/DD. We include Supplementary Security Income (SSI), Social Security Disability Insurance, (SSDI), Childhood Disability Benefit (CDB), Medicaid, 1619 b, Medicare, Vocational Services, SNAP (Food Stamps) HEAP, WAP and Transportation Services.
4.1 Public Benefits Based on Income and Disability
Independent housing requires an understanding of what resources a person might already have. We begin by determining the federal and state supports and services for which a person may be eligible, and what they need to do to obtain those services.
While still in high school a student is entitled to receive Transition Planning Services, and these should include plans to become qualified wherever they are eligible for the adult services and opportunities listed below. Too often transition planning does not focus on Long Term Supports & Services needs, including housing. People with I/DD and their families should insist that all Transition Planning include a comprehensive review of all the benefits we describe, and, if necessary, the services of a qualified benefit planner.
Whereas children and young adults under the age of 21 are entitled to a Free and Appropriate Education, services for adults over the age of 18 are based on a person being eligible. Eligibility criteria vary from one state to another and within states from one agency to another, and the fact that a person is deemed eligible does not necessarily guarantee that services will be provided.
The first step in the application process is to apply for Supplemental Security Income (SSI). SSI pays benefits to adults and children with disabilities who have limited income and resources. The Social Security Administration (SSA) focuses on a person’s ability to be self-supporting. To qualify for SSI, the person must demonstrate that they are unable to achieve “Substantial Gainful Activity” (SGA), in 2021 SGA is set at $1310 income per month, by virtue of a disability, and that the disability is expected to last for one year or more. If the application is for a minor child, family income is taken into consideration. For people over the age of 18, their personal income is the only one considered. In order to qualify, a person may not have assets in excess of $2,000, although there are several clear opportunities described later in this Guide to preserve savings at a much higher level.
The Person should contact their local Social Security field office to apply. In most cases family physician reports will be sufficient to establish the disability need. In most states a person receiving SSI automatically qualifies for Medicaid; in 11 states the application follows SSA guidelines but is separate and in seven states the state’s own criteria apply.
In addition to the Federal Benefit Rate (FBR) most states provide an additional State Supplement, which may vary depending on where the person lives and with whom they live. A person can apply for SSI by phone, or in person and he or she may have assistance from a family member or other representative. For more information about how to apply, go to the Social Security website at http://www.ssa.gov/ssi/text-apply-ussi.htm. SSI is intended to provide for basic food and shelter and as such should not be used for other purposes. If support for food and housing is received from other sources, what Social Security terms “In Kind Support and Maintenance” it may affect a person’s SSI.
It is essential that the housing planning process include a qualified Benefit Adviser whenever possible to ensure that a person receives the optimal amount of public benefits to which they are entitled or for which they are eligible, while incentivizing employment and other sources of support as much as possible. Your Housing Navigator will also be informed on the different benefits and pitfalls to avoid.
SSI may be paid to the person directly, or to someone they designate as their Representative Payee, usually a parent or relative. The “Rep Payee” acts to ensure that the Social Security payments are spent appropriately and that the funds are accounted for annually in the Representative Payee report provided to the SSA.
When a person resides in Congregate Care, the Provider agency generally becomes the Representative Payee. This is technically at the person’s option, but agencies might pressure a person to have them become rep payee. The person with I/DD receives a modest allowance, reset annually by Social Services legislation, for personal expenditures, administered from their SSI by the Provider agency.
It is possible to work while receiving SSI. Social Security exempts the first $65 of a person’s earnings for consideration in calculating their SSI benefit. Thereafter, for every $1 they earn through employment, they will lose 50 cents of their SSI. When their earnings reach the Break-Even Point, (BEP) i.e. where their SSI is reduced to zero, they will no longer receive SSI but may still retain eligibility for Medicaid. (See 1619(b) below)
A person may also qualify for Social Security Disability Income (SSDI). SSDI is an insurance program funded through payroll withholdings so it requires that a person has worked for pay and made at least the minimum monthly contribution to the insurance fund over a specified time. That time being measured in “units” or quarters, the number of which will vary according to the person’s age. A person may also be eligible for SSDI if they have a parent (or in some circumstances a grandparent) who is retired or deceased and who paid into the fund. This is known as “Childhood Disability benefit” or CDB (formerly known as “Disabled Adult Child” payment). The amount of CDB a person receives is based on the parent’s “Primary Insurance Amount” (PIA) which is determined by the parent’s Full Retirement Age (FRA). While the parent is alive their child will receive an amount equal to half the amount of the parent’s PIA. When the parent dies that amount will increase to three-quarters of the parent’s PIA. SSDI payments, including CDB, are considered when calculating SSI. Once SSDI reaches a certain threshold it may reduce SSI to zero and potentially affect continuance of Medicaid, so people with I/DD and their service coordinators need to monitor the SSDI level. Parents can find out what their retirement income will be by creating a “My Social Security” account on the Social Security Administration website. This will help them to predict what their son or daughter’s CDB will be.
1619(b) and Medicaid Continuation
Even if the person’s SSI is reduced to zero as a result of their SSDI being increased or by their income from employment it does not have to result in the loss of Medicaid. Under regulation 1619(b) a person who has been an SSI recipient can continue to be eligible for Medicaid. Some states permit people to continue to receive Medicaid even if they exceed the state’s eligibility threshold by allowing them to “Buy-In” to Medicaid.
SSDI by itself does not qualify persons for Medicaid, but once they have been receiving it for 24 months, they will be eligible for Medicare. Medicare is the federal health insurance program that provides access to health care for people with disabilities. While people with I/DD may be enrolled in Medicare it is a medical insurance policy and is not directly involved in housing. People who receive both Medicare and Medicaid are sometimes referred to as “Dually Eligible” or “Duals”.
- Medicaid is a health insurance program for people with disabilities, as well as senior citizens and people with low incomes. Medicaid is a federal program administered by the states. Funding is at least 50% from federal sources, with the balance being paid by the state. States with higher rates of poverty may receive as much as 75% federal contribution. States have to administer Medicaid funded programs in adherence to guidelines agreed to with the federal Centers for Medicare and Medicaid Services (CMS). Medicaid is rooted in a “medical model” that views disability as a deficit to be assessed, treated and prescribed for. As such Medicaid funding brings a welter of rules and regulations that have accumulated over the decades and may inhibit best practices. Medicaid is the primary foundation of funding for Long Term Supports & Services (LTSS).
- Medicaid Waiver States may negotiate with CMS to be permitted to “waive” certain elements of the Social Security Act, to allow them more flexibility in delivering Medicaid funded services. These generally fall under the mantle of a “Home and Community Based Services” (HCBS) HCBS waivers allow for funding to be directed to the person’s need rather than to an agency program, and their introduction in 1981 was intended to increase opportunities for personalized services.
Under the waiver, CMS requires that Medicaid Waiver programs be more person-centered and personalized.
- Waivers should encourage Self-Direction.
- Waivers should include Person-Centered Planning.
- Every participant should have a Person-Centered service plan (In New York that is now the Life Plan, formerly the Individual Service Plan or ISP).
- Every participant should have a Personalized Budget, and a Personal Resource Account (PRA).
- The state must provide Information and Assistance in support of Self-Direction.
- The state must monitor for Quality Assurance and improvement.
Observance of these stipulations vary from state to state but it is important for people with I/DD and their families to insist that the state and its providers adhere to the federal requirements in spirit as well as in letter.
Employment and Rehabilitation Services
The Rehabilitation Act of 1973 “authorizes the formula grant programs of vocational rehabilitation, supported employment, and client assistance. It also authorizes a variety of training and service discretionary grants administered by the U.S. Department of Education. The Act also includes a variety of provisions focused on rights, advocacy and protections for persons with disabilities”. This act includes section 504, (the source of “504 plans”). Depending on the state these services may be delivered by a stand-alone agency or through the education system.
- Adult Career and Continuing Education Services-Vocational Rehabilitation (ACCES-VR) OPWDD is the principal agency serving people with I/DD in the state, and as such, provides employment related support to people with I/DD who need significant support. People who aspire to paid employment should also seek support from ACCES-VR. ACCES-VR work training and support services can be applied for directly from the regional office, and the application process should begin when a student enters the last year of high school. The application should be included in the student’s Transition Plan and school counselors should connect the student with the ACCES-VR process.
- Supplemental Nutrition Assistance Program (SNAP). Administered by the US Department of Agriculture through state agencies. Previously and colloquially known as “Food Stamps” this is a federal program originally created in the 1930s to support farmers while feeding the hungry cities. It was put in place permanently in 1964 and is renewed annually as part of the Farm Bill. SNAP can only be used to purchase household foods, and may not be used to purchase prepared foods or household supplies. It can also be used at participating farmers’ markets and Community Supported Agriculture (CSA) cooperatives. SNAP eligibility is determined by the income of a household, currently set at or less than 130% of the Federal Poverty Level (FPL) which will vary with the number of people in a household and must be renewed annually. States may enforce or waive work requirements, and resource requirements will vary from state to state. Most states have moved from issuing actual stamps in favor of Electronic Benefit Transfer or EBT.
- In New York State SNAP is administered by local Social Security offices but you can apply for SNAP online through the myBenefits https://mybenefits.ny.gov/mybenefits/begin
- Low Income Home Energy Assistance Program (HEAP). HEAP was created in 1980 to help families facing rising fuel bills. The program, administered federally by the Health and Human Services administration (HHS) is renewed annually by Congress and funds are allocated to the states for their distribution. Eligibility is based on FPL and state median income guidelines. Funding is released annually and generally is only available on a first-come-first served basis.
In New York HEAP is applied for in the same way as SNAP, through the myBenefits website. Funds are released in November so applications should be made in a timely way. HEAP can also be applied for through certain energy providers, for example Con Edison in NY City. https://www.needhelppayingbills.com/html/consolidated_edison_bills___lo.html#:~:text=Dial%201%2D800%2D293%2D,disabled%20keep%20their%20heat%20on.
- Weatherization Assistance Program (WAP) WAP was created in 1976 to increase energy efficiency in the homes of people with low incomes. Overseen by the Department of Energy, as with HEAP the program is funded by Congress annually, and eligibility is based on the FPL. WAP teams audit a property for energy efficiency and install weatherization measures to reduce energy consumption.
In New York WAP can be applied for through the myBenefits website, funds are limited and are applied on a first-come first-served basis
The Americans with Disabilities Act of 1990 prohibited discrimination on the basis of disability, including in the availability and accessibility of transportation. The ADA “requires public transit agencies that provide fixed-route service to provide “complementary paratransit” service to people with disabilities who cannot use the fixed-route bus or rail service because of a disability. The ADA regulations specifically define a population of customers who are entitled to this service as a civil right. The regulations also define minimum service characteristics that must be met for this service to be considered equivalent to the fixed-rate service it is intended to complement”. In most states provision of paratransit is devolved to the local level depending on the transportation authority,
It is an unfortunate fact that 30 years after the passage of ADA compliance is still far from complete. Many rural counties have no public transportation and therefore no obligation to provide paratransit. In urban settings accessibility remains an issue, for example only a quarter of New York City subway stations are accessible.
In New York State paratransit is typically provided on a county level. Fares are based on the fares in the broader system, and depending on the needs of the person with a disability and the local authority the ride may be from door-to-door or to points on the bus routes. Application is made locally and requires proof of disability and often an in-person assessment. https://www.nyconnects.ny.gov/services/access-a-ride-paratransit-transportation-disability-services-sofa241 NY City has a city-wide system, “Access A Ride” that uses private contractors. https://access.nyc.gov/programs/access-a-ride/.
ConEd CONCERN. The Concern program covers billing options, third party notification, and other services. Con Ed also has a "Low Income Rate," where the account holder can receive a discount on the monthly Basic Service. The discount can range from $7 - $12 per month. The Energy Share program is a $200 grant, which works in tandem with HEAP. This program is only to be used in an emergency; it requires that the customer has an active “disconnect notice”, and it can only be used once every 5 years. These programs are available to those receiving SSI/Medicaid. The application process begins in mid-January, and is the responsibility of the person.
PSEG has Residential Energy Affordability Partnership (REAP). Representatives will come in and perform energy efficiency surveys and provide light bulbs and possibly replace appliances. https://www.psegliny.com/myaccount/customersupport/financialassistance/reap
LifeLine. This is a basic phone service which is supported by the Federal Communications Commission, and by the Universal Service Fund. The program provides discounts on monthly telephone service (landline or wireless) for people with low incomes. Income levels need to be below $15,755 a year and only one LifeLine is available per household. The application may take up to 90 days to process for approval and it must be renewed annually. As an example, Verizon offers a landline base rate of $1/month for the dial tone (monthly service) vs. its standard fee of $15.80/month, plus $0.09 for each local call.
Advocacy. The low Income and disability benefits in this section are administered by a wide range of federal agencies including Social Security, the Department of Education, HHS, Departments of Energy, USDA and the Department of Transportation - their state counterparts may be just as diverse. It is important to keep this diversity of funding and legislation in mind when working to ensure continuation of existing benefits and advocating for system changes.
For a summary of Benefits view the webinar originally created for the 2020 Statewide Learning Institute “IDD & Optimal benefits” at https://youtu.be/JO4xanmSaDc
4.2 Public Benefits Specifically for people with I/DD
In this section we review public funding support that is specifically for people with disabilities and in particular for people with I/DD.
Medicaid Waiver, discussed above, is the primary means by which states pay for staffing. These services will typically be divided between those provided during the day – for example habilitation, work readiness etc. and those provided in the person’s home or licensed residence. The most frequently accessed Waivers are 1915 and 1115 waivers and you should identify which waiver or waivers your state is using, whether they include Self-Directed services and how they affect you.
States may also provide other options including rental supplements, non-Medicaid respite, Information and Referral and in-home supports
Support for people with I/DD in New York State
The first step is to apply to the Office for People With Developmental Disabilities (OPWDD). OPWDD is responsible for coordinating services for New Yorkers with developmental disabilities, including intellectual disabilities, cerebral palsy, Down syndrome, Autism Spectrum Disorders, and other neurological impairments. The person should apply to one of the five Developmental Disabilities Regional Offices (DDROs).
Once deemed eligible by OPWDD, the current route to obtain services is through the “Front Door” process, which is handled directly by the DDRO. The Front Door and all aspects of planning are governed by OPWDD’s Individualized Community Supports (ICS) philosophy which stresses self-direction and choice.
The Front Door process includes an assessment of a person’s needs, which is intended to guide the services that will be provided and the budget associated with those services. Since the 1980’s NY State has used an assessment instrument called the residential Developmental Disabilities Profile 2 (DDP2). The DDP2 generates a score across three domains: Adaptive, Behavioral and Health. These scores are used to generate a budget and Personal Resource Account (PRA). The algorithm used to generate the PRA is not transparent. The DDP2 also generates an Individual Service Planning Model (ISPM) score on a scale of 1 to 6 with 6 being the highest level of need. This is used to help determine a person’s level of budgeted services. The DDP2 instrument was revolutionary when introduced as a post-institutional model in the 1980’s, but it is deficit-based and implicitly incentivizes applicants to highlight their disabilities in order to achieve a high level of services and a larger budget. New York State is now introducing the Coordinated Assessment System (CAS). This is the OPWDD version of an instrument used across the Department of Health subsidiary agencies which seeks to gather data that may help to rationalize and report on services. The instrument seeks to identify a person’s functional needs for support rather than to simply highlight their deficits. Functional need connects to the eventual development of a budget and PRA. The PRA is critical to developing a service plan, and is based on the principle that “Money Follows the Person” (MFP).
The principle that funding for a person’s services should be “attached” to the person instead of the agency that provides services was enshrined in the Supreme Court’s Olmstead decision in 1999 in a suit brought under the Americans with Disabilities Act (ADA). The court ruled that as long as health and safety were assured, a person could require that services be delivered in a milieu of their own choosing, as long as the costs of the new setting did not exceed those of the institutional setting in which they had previously been. Six years later, under the Omnibus Budget Reconciliation Act of 2005, President George W. Bush signed the principle into law affirming that wherever possible money for services and supports should “Follow the Person”. This change in how services are controlled, funded and delivered is the most significant change in policy and practice since the deinstitutionalization of the 1970’s; while it is only slowly being implemented it has far reaching consequences for all stakeholders.
Eligibility for OPWDD services is narrowly defined; a person must test as having an I.Q. of 60 or lower - or must have significant adaptive needs if their I.Q. is higher than 60. As OPWDD services have become more expensive, eligibility criteria have narrowed. A significant population of people with I/DD who need LTSS risk being shut-out unless the state can adapt the ways in which services are delivered to be more flexible and personalized to support a spectrum of need.
- If a person is approved by OPWDD for its services at the Front Door they should apply for Medicaid. If they are a recipient of SSI they are already Medicaid eligible. If they do not already have Medicaid, they should apply through the New York State Department of Health website  which also has links to Medicaid Navigation services.
- The next step is to apply for Medicaid Waiver, again through the DDRO. Once approved the person will be offered a choice of Care Coordination organization from which to select a Care Manager. There are currently seven Care Coordination Organizations (CCOs) in the state, but not all seven are represented in each of the five regions. In choosing a CCO the person should follow the same due diligence as they would with choosing a Provider Agency. The Care Manager is responsible for ensuring that the person receives the state and Medicaid services to which they are entitled or eligible.
- Self-Direction Two critical concepts that are fundamental to personal choice and to which the federal and state funding agencies refer frequently are Self-Direction (SD) and the Circle of Support. (OPWDD recently adopted the term “Planning Team” as part of the Self-Directed services process, but we prefer to continue to use the term of art, “Circle of Support” in the context of housing). As discussed in the section on Person-Centered Planning while the Circle of Support is involved in planning it is also designed to be part of the person’s life for years to come, to be adaptable to change and to advocate for the person.
- Self-Directed Services The term “Self-Directed” is used by the CMS to mean that “participants, or their representatives if applicable, have decision-making authority over certain services and take direct responsibility to manage their services with the assistance of a system of available supports. The self-directed service delivery model is an alternative to traditionally delivered and managed services, such as an agency delivery model. Self-direction of services allows participants to have the responsibility for managing all aspects of service delivery in a person-centered planning process.” 
For SD a person must apply through the Front Door, where the DDRO will assess whether they would be best served by the Self-Directed model. If a person is approved for SD the DDRO will provide them with a list of brokers. The broker (formerly known as the “Startup” broker) will help them and their Circle of Support to create a Person-Centered Plan and budget for the services they need, including residential support. Under SD the Care Manager (CM) must be a member of the Circle of Support, and cannot simultaneously function as a broker and a CM. Care Coordination Organizations (CCOs) were in part established to eliminate the conflict of interest that formerly arose when an agency providing service coordination was also the agency providing services. Once the budget has been approved by the DDRO and by the Division of Budget in Albany, the broker will either continue to work with the person or alternatively forward the brokerage role to another broker (formerly termed the “Support Broker”), who will work with the person to implement and sustain the plan. Under SD people may choose to obtain services from a provider agency, or, subject to certain restrictions and requirements, hire someone they select themselves. This is known as self-hire. Services that are not directly purchased from an agency are paid for through an OPWDD approved Fiscal Intermediary (FI), formerly known as Financial Management Service agency or FMS, which acts as the employer of record for any self-hires. The first iteration of Self-Direction “Consolidated Supports and Services” (CSS) was created in 2002, so this is nothing new. SD evolved from CSS in 2009 but is only now being scaled up and there are frequent operational changes as the system evolves. These changes can be frustrating to all involved, but the principle behind SD - Money Follows the Person - is essential to realizing housing independence, and Self-Direction, sometimes coupled with the Housing Subsidy Program, formerly known as “Individual Supports & Services’ or ISS, is the current mechanism within OPWDD services that is built around that principle.
The Role of the Circle of Support
At this point It is vital that the person and their Circle of Support become informed on the service options available to them and take the opportunity to do at least some preliminary planning. Consider the person’s occupation; day services range from full time “Day Habilitation” to full time employment and variations in between. What do they do with their day – what would they like to do with their day outside of programming or employment? Consider where they will live; In terms of housing plans the person should be thinking about the level of support they will need, where they want to live and whether they will want or need to live with other people. An important fork in the road is deciding whether to pursue certified housing or non-certified housing and whether to pursue Agency based services or Self-Directed services, bearing in mind that there can be considerable interaction between the two. The Care Manager should participate in the discussion and can provide information as to what services are likely to be available.
- I AM and the Lifeplan The Care Manager meets with the person and their representatives and administers an assessment tool known as the “I AM”. The purpose of the I AM tool is to create a Lifeplan intended to reflect a person’s needs and wishes through a menu of “Valued Outcomes” that can be related to available and billable services. At some point in the future this process will develop a budgeted Personal Resource Account; however, at this time the budget is still based on the DDP2 and the ISPM score.
- OPWDD’s new website includes a helpful guide to OPWDD services “Front Door” which gives a broad overview of some of the housing options. 
To learn more about how to optimize Social Security benefits visit NYHRC’s website and view “Income and Eligibility. Optimization” presented by John Maltby as part of the “Statewide Learning Institute” in 2019: https://register.gotowebinar.com/recording/1581138804753288450
4.3 Income from Employment and How to Preserve Savings
In this section we discuss how to be employed but still receive necessary benefits and supports, as well as how to save and receive support from non-governmental sources.
As described by the US Department of Labor, “Employment First” “is a concept to facilitate the full inclusion of people with the most significant disabilities in the workplace and community. Under the Employment First approach, community-based, integrated employment is the first option for employment services for youth and adults with significant disabilities.”  Since 2012, New York State has been an Employment First state, and its principles have been adopted by OPWDD.
In the past a person with I/DD might have been directed automatically towards a day program of segregated enclave work in Day Habilitation. They may have worked in a Sheltered Workshop for wages or received Supported Employment (SEMP) services or the Employment Training Program (ETP) funded through OPWDD. As part of OPWDD’s Transformation Agreement with CMS, Sheltered Workshops are closing. Day Habilitation services will be encouraged to be “without walls,” not center-based, and to increasingly emphasize Pathways to Employment, a new program with the goal of paid work for as many people as can achieve it. This major social, cultural and financial transition will take many years. Its impact will be that people with I/DD who in the past were not expected to earn their own money will now be more able to do so without affecting their necessary services.
There is a persistent myth that when a person goes to work, they lose their benefits. This is not true. Social Security legislation encourages work. When a person begins employment the first $65 of their earnings is exempted from consideration when calculating their countable income, i.e. the amount that Social Security attributes to employment and any unearned income other than the General Exemption for Unearned Income of $20. Thereafter every dollar they earn will result in a loss of 50 cents from their SSI. As the person earns more their SSI will diminish but this is because their overall income is increasing. At the Break Even Point (BEP), currently $22,164 in NY State in 2021, their SSI will have been reduced to zero.
As previously discussed, even if a person’s SSI is reduced to zero because of their earnings they are likely to remain eligible for Medicaid through Social Security’s 1619 (a) or 1619 (b) Continued Medicaid Eligibility. In New York State they will remain eligible until their earnings reach $46,316 (in 2021), and may be able to “buy-in” up to an income of $64,836 for a single person.
If this seems complicated, it is. It is vital to consult with a Benefit Advisor or Housing Navigator versed in benefit optimization as a person’s resources begin to increase. Benefit Advisement is a service offered through OPWDD and/or ACCES-VR funded agencies such as Independent Living Centers or through private fees to agencies that provide this service.
Social Security Administration (SSA) programs such as Impairment Related Work Expenses (IRWEs) and Plans for Achieving Self Support (PASS plans) are designed to help people get a foothold in the workplace by agreeing to exclude an agreed upon amount of earned income from consideration of their countable income for SSI purposes. An IRWE can be claimed when a person with a disability pays for the support themselves, said support is related to an impairment, and the person would not be able to work without it. Eligible support includes Supported Employment, work related equipment, transportation and certain medical costs. A PASS plan is a work incentive that allows income or assets to be used to achieve work related goals. Under an approved PASS plan income or resources will not count when determining eligibility for SSI.
For people living in public housing the department of Housing and Urban Development (HUD) provides support through the Earned Income Disregard (EID) which reduces and defers the impact on rent cost of a person going to work.
The Social Security Administration (SSA) also discounts earnings for people receiving SSDI who are deemed to be covered under “Subsidies” and “Special Conditions”. These may occur if an employer is paying an employee with a disability the same wages as someone else who is doing the same work but producing a greater output for example, or, for someone who is receiving job support either paid for by an agency or from natural support. This would include people working in Supported Employment (SEMP) or in an Employment Training Program (ETP).
Earned Income Tax credit (EITC) 
- The IRS program provides a cash payment to people with Extremely Low Income (ELI) who file tax returns. Intended to support working families, benefits are modest for single working adults, but can make a difference of up to several hundred dollars for a person working at minimum wage.
- Credit and Credit Score As with anyone else who will be purchasing or renting a home the lender or landlord will want to see if a person is creditworthy. The lenders will look at income, whether from an entitlement, a trust, or from work. They will also look to see if there is a sound history of paying back any credit owed and that the person is reliable with bills and obligations. There are companies that track personal credit history and it is important to have developed and demonstrated a good credit history if a person wants to obtain a mortgage or other financing.
Obtaining a “Secured Credit Card” or being an “Authorized User” on another person’s such as a parent or guardian’s credit card, and having a history of making regular payments (e.g. rent) are all ways that a person’s credit usage can contribute to building a credit history. It can take one or more years of payment history to build a credit history but it is a helpful way to learn money management skills and to build independence. The sooner a person gets started the better. Support in learning how to manage finances, prepare a tax return, receive an EITC and other skills are available through Volunteer Income Tax Assistance (VITA) programs that provide free assistance to people with low incomes or disability. 
To learn more about the CA$H Coalition and how to improve a person’s credit history you can access recorded webinars by Melinda Burns of the CA$H Coalition at https://youtu.be/a1Gr-1UFKNg and https://youtu.be/kW-ynT2nBIw
4.4 Protecting Savings
Public benefits can help to provide long term sustainable support, but as people with I/DD have increasingly become more integrated into the community other sources of income and support have become available.
A significant impediment to increasing employment for people with disabilities has been the perception that earning an income will reduce or eliminate benefits. Much publicly available information concerning this issue is misleading or false. The reality is that most people receiving benefits will add to their net incomes if they are paid for the work that they do.
SSA rules cap individual savings at $2,000 if a person is to continue to receive SSI. As people go to work however, they may be able to accumulate savings that can be protected from consideration by SSA when determining a person’s assets.
Individual Development Accounts (IDAs) which may be federally funded or increasingly through foundation support will incentivize savings by providing a match of as much as 4:1. The IDA must have a defined purpose and the range of savings objectives is limited to housing or employment objectives, e.g. the down-payment on a first home . Savings in qualifying IDAs are not counted as assets when SSA considers SSI eligibility. Credit cooperatives and banks may provide Matched Savings programs which match a person’s savings up to 4:1 if directed towards a down payment for a home. IDAs and Matched Savings programs are intended to support people with low incomes and are subject to asset and income restrictions. Qualifying matched savings programs are also exempted from consideration in Social Security’s countable income.
People living in HUD-funded housing may be able to enroll in a Family Self Sufficiency (FSS) plan , usually to purchase a home or to achieve an education or employment goal. The plan will set aside rent increases that might be incurred due to increased income when a person goes to work, and repay them to the family once the plan is successfully completed.
Achieving a Better Life Experience (ABLE)
The federal ABLE Act was passed in 2014 and New York State created its accounts in 2017. An ABLE account is similar to a 529 College Savings Plan and is based on the same IRS regulation. A person may only have one ABLE account and annual contribution from all sources is currently capped at $15,000 in any year. If the amount in the account ever exceeds $100,000 the account holder will lose their SSI until the amount goes back below $100,000 again. When they die any remainder in the account will be subject to a Medicaid lien in the same way that any remainder in a First-Person trust would be. There are other rules and regulations that should be understood by the beneficiary before opening the account. The virtue of an ABLE account is that it is simple to open and to keep track of, and the funds may be used for a wide variety of purposes (including housing) without impacting SSI eligibility.
Family and Other Resources
Supplemental Needs Trusts (SNT)
An SNT holds funds that can be used to supplement the public benefits received by a person with a disability without compromising their public benefits, including SSI and Medicaid. Funds may be used to pay for personal items and necessities with limitations on their use to buy food or shelter. Trusts are not solely for people of means, and can be used to provide for housing support and, with restrictions, for housing itself. Trust law is a specialized field, the laws vary from state to state and it is essential that an individual and their family consult with a New York licensed Special Needs or Elder Law attorney before creating or joining a trust.
There are three primary types of SNTs that are established for individuals with I/DD.
- Third-Party/Supplemental Needs Trust (SNT) These are usually established by a parent or other guardian or relative. Funds may be invested immediately or over time, or they may be funded through an insurance policy payable upon the death of a parent. Upon the death of the beneficiary funds revert to the trust to be disposed of at the trustee’s discretion.
- First-Party Trust This type of trust is established by an individual, their parent or guardian or court, and funded with the assets of the beneficiary, for example from an insurance or lawsuit settlement. In New York a first-party trust may also receive income from SSDI or CDB in excess of the Medicaid threshold to prevent the need for a Medicaid “spend-down”. Assets must be used for approved purposes. When the beneficiary dies, the state has a right to be paid back for medical assistance (e.g. Medicaid) if there are any assets left in the trust. This is sometimes referred to as Medicaid “claw-back“.
- Pooled Trust This is an SNT for an individual that is managed by a nonprofit organization and established by a sponsor, such as an OPWDD provider agency. The sponsor manages the trust for the beneficiary in the same way as the other SNTs, with the difference that when the beneficiary dies any remaining funds may revert to the sponsor rather than to Medicaid.
As noted above, Trust law is complex, and creating or funding a trust requires significant qualifications and expertise. A consultation with a specialized attorney is essential.
4.5 Funding specifically for housing
In this section we review funding that is specifically for housing both from an income perspective and from programs designed to support people with I/DD.
HUD Housing Benefits Based on Income
United States Department of Housing and Urban Development (HUD)
HUD has a range of programs that help housing developers to create housing while helping people to pay for it.
- Housing Vouchers Section 8 of the US Housing Act of 1937 administered by the US Dept. of Housing and Urban Development (HUD) was created “For the purpose of aiding lower-income families in obtaining a decent place to live and of promoting economically mixed housing, low-income housing support and Housing Choice Vouchers.” Section 8 vouchers allow for a person with low income to limit their housing cost to 30 percent of their gross income (in some circumstances as much as 40 percent) with the balance paid by the program. Housing Choice vouchers also allow for a tenant to save towards the purchase of a home. Each municipality in each state has a quota of vouchers. Waiting lists can be long; many are closed to new entrants and funding is currently constrained by federal budget sequestration. Notwithstanding these constraints a person should seek to be included in any open list where they live; vouchers are portable, and waiting lists are not infinite.
Housing vouchers are intended to be used by people with lower incomes. While the HUD guidelines are complex in detail, Low Income is defined as 80 percent of the Area Median Income, (AMI), Very Low Income as 50 percent of the AMI and Extremely Low Income as 30 percent of AMI. Housing agencies must provide 75 percent of their vouchers to applicants whose incomes do not exceed 30 percent of the AMI To determine your AMI you should visit the US Census Bureau website and sort by your county or municipality. There is a wide range of income in the state; Per the US Census Bureau (2021) household income in Allegany County was $48,412, in contrast to Nassau County’s at $116,100 The median value of owner-occupied housing in Westchester county is $540,600, that of Allegany county is $76,400. Per capita income in New York County is $76,592, while in adjacent Bronx County it is $21,788. These contrasting levels of wealth are relevant to the provision of housing and services. Housing costs, including local taxes, help to determine where people live. The availability of DSPs and other service providers is influenced by the cost of housing and commuting, and affected by potential earnings from other work in the region. The reimbursement rates paid to providers vary from region to region depending on the service provided. As noted above the typical income from SSI in NY in 2021 is $10,572. Most people with I/DD whose income is primarily from SSI will qualify for Section 8 vouchers. While these vouchers are intended for those with low incomes there may additionally be “preferences” for people with disabilities. To apply for a Section 8 voucher a person should contact their municipal Housing Authority directly.
Does Having a Trust or Other Assets impact Section 8 Eligibility? In general, some assets, particularly those that could be used to pay rent or pay medical expenses, often known as “investable” assets, can be considered part of a person’s resources. The Section 8 office may calculate an annual hypothetical income from those resources at a 2 percent rate. Even though a Third-Party Trust is not under the control of the person who is the beneficiary, it could be included as one of these assets. The Evelyn Frank Legal Resources program of the NY Legal Assistance Group has a helpful publication, “Supplemental Needs Trusts, Impact on Medicaid and Other Public Benefits” (2013) which includes information on how public benefit oversight agencies view trusts. As with any legal matter the person should consult an attorney.
- Section 811 Section 811 housing is designed for “non-elderly disabled” and is a collaboration between a housing developer and a provider agency. “The newly reformed Section 811 program is authorized to operate in two ways: (1) the traditional way, by providing interest-free capital advances and operating subsidies to non-profit developers of affordable housing for persons with disabilities; and (2) providing project rental assistance to state housing agencies.”. Funding for this program is limited and competitive between states.
- Section 9 of the Housing Act provides for funding for Public Housing Authorities (PHAs). HUD funds both capital and operating expenses for the PHAs in NY State, 25 of which are listed on HUD’s website. PHAs provide housing for low-income people (80 percent to 50 percent of AMI). As with the individual Section 8 vouchers, the person pays approximately 30 percent of their income for rent with the balance assumed by the PHA. PHAs maintain their own separate waiting lists.
Housing Resources from New York State OPWDD
OPWDD Housing Subsidy Program (formerly Individual Supports and Services (ISS)/Self-Direction Rental Subsidy)
The Housing Subsidy is supported by “state only” funds derived directly from state taxation, and independent of Medicaid funding. As such they can be used at the state’s discretion, allowing for more flexibility. In the past, ISS could be used to pay for a wide range of services, but currently it is only used to provide housing rental subsidies which are based on guidelines from the New York State Department of Housing and Community Renewal (HCR). The guidelines state that the person should not pay more than 30 percent of their income and the rental subsidy will cover the remaining 70 percent. However, the OPWDD subsidies were modeled on the HUD Fair Market Rents of 2012 and have not been adjusted since. Since 2012, HUD’s New York State Fair Market Rents have increased by on average 26 percent with some increasing by as much as 59 percent. This means that while the rental subsidy can help; it is insufficient at best and urgently needs to be increased to a realistic level. A person seeking the rental subsidy should contact their Housing Subsidy liaison at the DDRO themselves or through their Care Manager or Support Broker.
View Seth Greenman’s Webinar “OPWDD’s Housing Subsidy” at https://youtu.be/E7WlP8RSneI
County Based Departments of Social Services (DSS) The Department of Social Services (DSS) is under The New York State Office of Children and Family Services (OCFS). The DSS within New York State’s Medicaid program covers personal care services, also known as home attendant services, for those that qualify for these services. This is a type of unskilled, custodial care provided in the home to people with physical or mental impairments that interfere with their ability to independently perform activities of daily living. They can provide funding for personal aides and other support and, critically for people with I/DD, medication management which Direct Support Professionals working under the OPWDD waiver are not able to do. Through Consumer Directed Personal Assistance Program (CDPAP). These funds cannot be used to purchase housing services but they expand the options for residential supports. Applications should be made through the DSS using a 1050 form. Eligibility is based on the level of need, and applicants must have Medicaid. 
Housing Resources from US Department of Agriculture (USDA)
The USDA provides financing to developers, municipalities and nonprofits to build housing for older adults, people with disabilities, or people with low-income living in rural multi-unit housing complexes. Despite being home to the most populous city in the country, New York State ranks seventh in overall density, with extremely low density in some parts of the state including the Finger Lakes and Western New York regions The USDA provides housing support for ownership but not development and Environmental Modifications. To understand USDA housing programs visit their site at https://www.usda.gov/topics/rural/housing-assistance
People with I/DD may be eligible for services from providers other than OPWDD. As the paths to housing change it becomes clearer that people with I/DD need to understand these other services and forge alliances with other groups that seek to find LTSS and housing.
New York State Office of Mental Health (OMH)
The NYS OMH is charged to assist those with mental illness with medical care and related support services. Historically OMH provided housing through its Community Residence Program which ranged from highly supported “Congregate Treatment” settings to less restricted settings with all day support, to Single Room Occupancy (SRO) settings with varying levels of support. In the past the emphasis has been on transitioning back to the community wherever possible, with several of the housing options designed to enable that transition rather than to provide permanent housing. In 2012, recognizing the importance of permanent housing in providing a predictable and stable environment, the state implemented the Supported Housing Program in order to increase permanent housing options and with “recipient specific support services designed to assist people in succeeding in their housing.” This model is designed to reduce the revolving door effect of transitional and institutional mental health programs. This is a stipend program, when Section 8 or other sources are unavailable that limits housing cost to the person to approximately 30 percent of their income. The stipend is paid to the rental agency, not to the person. A diagnosis of a mental illness is required in order to be eligible for these programs.
Administration on Aging (AoA)
AoA programs, funded under the Older Americans Act of 1965, provide assistance to older persons and their caregivers and support services that help older adults remain independent and involved in their communities. The Section 202 Supportive Housing for the Elderly program (similar to Section 811) is provided by private, non-profit housing and service-oriented organizations that have received capital advances from HUD to finance the construction and rehabilitation of housing for older adults with low-incomes. This program provides rent subsidies, and the supportive services include meals, transportation, and accommodations for residents with disabilities.
The New York State Office of the Aging assists older persons with living independently and accessing necessary resources. The Office of the Aging directs those wishing to live independently to the NYS Housing Websites (http://www.nyhousingsearch.gov/) and http://www.nyshcr.org/AboutUs/affhsg.htm,. These sites are funded through the NYS Homes and Community Renewal (HCR).
 NYS Ed Law requires transition planning begin at the IEP preceding 15th year. Federal IDEA requires at beginning of 16th year.
 To confirm the SGA visit SSA website. http://www.socialsecurity.gov/oact/cola/sga.html Retrieved March 2020
 To learn the rules in your State go to https://www.ssa.gov/disabilityresearch/wi/medicaid.htm. Retrieved March 2020
 Primary Insurance Amount or PIA, the benefit (before rounding down to next lower whole dollar) a person would receive if he/she elects to begin receiving retirement benefits at his/her normal retirement age. At this age, the benefit is neither reduced for early retirement nor increased for delayed retirement https://www.ssa.gov/OACT/COLA/piaformula.html retrieved March 2020
 Full Retirement Age varies with the age of the beneficiary. See SSA https://www.ssa.gov/planners/retire/retirechart.html retrieved March 2020
 Social Security website https://www.ssa.gov/myaccount/?gclid=CjwKCAjwnIr1BRAWEiwA6GpwNQEmmhyEfbLO1mMnOJZhHGQ6IUnpOHr4_NHq5SG91BfR4h9mHkMwRhoCfo4QAvD_BwE retrieved April 2020
 HCBS services were created in 1981 but were not taken up in NY until 1992.
 https://www.medicaid.gov/sites/default/files/2019-12/1915c-fact-sheet_0.pdf retrieved February 2020
 From U.S. Department of Labor https://www.dol.gov/agencies/eta/disability/laws retrieved March 2020
 For federal poverty guidelines check https://aspe.hhs.gov/poverty-guidelines retrieved March 2020
 https://www.mybenefits.ny.gov/mybenefits/begin retrieved January 2021
 ADA & Paratransit NADTC https://www.nadtc.org/about/transportation-aging-disability/ada-and-paratransit/ retrieved March 2020
 http://www.phone-bill-assistance.com/lifeline/NY Retrieved April 2020
 Refer to OPWDD Front Door site. https://opwdd.ny.gov/get-started/front-door retrieved February 2020
 Medicaid requires that states implement a Preadmission Screening and Resident Review (PASRR). The move to CAS is required to maintain compliance. Medicaid’s 2014 report on PASRR described the existing processes as inadequate in much of the country.
 The CAS is based on the “Inter RAI”. For more information see their website https://www.interrai.org/ retrieved May 2020
 Apply through the NY DOH site https://nystateofhealth.ny.gov/ Retrieved March 2020
 Navigator links at https://info.nystateofhealth.ny.gov/IPANavigatorSiteLocations. Retrieved March 2020
 CMS Website https://www.medicaid.gov/medicaid/long-term-services-supports/self-directed-services/index.htmll. retrieved April 2020
 https://opwdd.ny.gov/get-started/front-door retrieved November 2020
 Employment First at the US. Department of Labor. http://www.dol.gov/odep/topics/EmploymentFirst.htm retrieved April 2020
 Impairment Related Work Expense. See Social Security website https://secure.ssa.gov/poms.nsf/lnx/0410520001 retrieved May 2020
 PASS Plans see Social Security website https://www.ssa.gov/disabilityresearch/wi/pass.htm retrieved May 2018 and “PASS Online” from Cornell University http://www.passonline.org/ retrieved May 2020
 EID, see HUD Website https://www.hud.gov/program_offices/public_indian_housing/phr/about/ao_faq_eid retrieved May 2020
 For “Subsidies and Special Conditions” see SSA website https://www.ssa.gov/disabilityresearch/wi/subsidies.htm retrieved May 2018
 For an EITC Calculator and information check the IRS website https://www.irs.gov/credits-deductions/individuals/earned-income-tax-credit retrieved May 2018
 “Extremely Low Income” as defined by HUD is income that is 30% of the Area Median Income.
 To find a Vita program in your area go to https://otda.ny.gov/workingfamilies/vita.asp Retrieved July 2020
 “Everything you need to know about IDAs https://prosperitynow.org/everything-you-need-know-about-individual-development-accounts-idas retrieved May 2020
 Not to be confused with “Family Supports and Services” (FSS) from OPWDD!
 Section 8 of the US Housing Act of 1937 as amended, http://portal.hud.gov/hudportal/HUD?src=/programdescription/cert8 retrieved February 2020
 HUD Schedule of income guidelines. http://www.huduser.org/portal/datasets/il/il14/IncomeLimitsBriefingMaterial_FY14_v2.pdf retrieved February 2020
 HUD website. http://portal.hud.gov/hudportal/HUD?src=/program_offices/public_indian_housing/programs/hcv/about/fact_sheet retrieved January 2020
 https://www.census.gov/quickfacts/fact/table/US/PST045219 retrieved February 2020
 Available online at; http://www.wnylc.com/health/afile/44/9/ Retrieved May 2020
 For more information see HUD’s site https://www.hud.gov/program_offices/housing/mfh/progdesc/disab811 retrieved July 2020
 Look for your closest PHA on the HUD site http://portal.hud.gov/hudportal/HUD?src=/states/new_york/renting/hawebsites. Retrieved May 2020
 Contact information for County DSS at NYS DOH website. https://www.health.ny.gov/health_care/medicaid/ldss.htm retrieved June 2020
 “Supported housing” from OMH website. https://omh.ny.gov/omhweb/adults/supportedhousing/supportedhousingguidelines.html retrieved April 2020
Quick Access Links
Module 1: Person-Centered Thinking
Module 2: Certified and Non-Certified Housing
Module 3: Types of Housing
Module 4: How Independent Housing is Funded (current page)
Module 5: Support Services
Module 6: Creating a Housing Plan
Module 7: Transition
Module 8: Sustaining
Module 9: Conclusion & Acknowledgments