Services and Assistance Programs
Review the information in this training to learn about the variety of services and assistance programs that are available. You’ll learn about government programs; commonly used services and therapies; documents, forms, and plans related to benefit programs; and financial services that can help individuals pay for the services mentioned.
The Arc of Bartholomew County is a nonprofit organization aiming to be the resource of choice for individuals with intellectual or developmental disabilities and their families.
The organization was established in 1956 and continues to serve the community.
The training you're currently exploring was developed with the support of a Heritage Fund grant. The grant's goal was to expand online services and build resilience during the pandemic.
Training Introduction
This training introduces Services and Assistance Programs that benefit individuals in all walks of life.
It's designed to be completed in one sitting, but there are no time limits. This is a guided learning experience. We expect this training to give you a deeper understanding of the topic both technically and culturally.
Government Programs
Understanding and navigating government programs is a necessity for many people with intellectual and developmental disabilities.
The section that follows provides an introduction to several of these major programs:
Medicaid
Medicaid Waivers
Medicare
Supplemental Security Income (SSI)
5 Social Security Disability Insurance (SSDI)First Steps
Pre-Employment Training Services (Pre-ETS)
Vocational Rehabilitation (VR) Services
Medicaid
Medicaid is the federal program to provide health insurance for a variety of people. Generally, Medicaid is available for individuals who earn a low income. Individuals who require long-term care services are often required to become eligible for Medicaid to receive the care they need.
Medicaid was introduced in 1965 and has continued to evolve over time. The Patient Protection and Affordable Care Act (PPACA, sometimes shortened to ACA), aimed to streamline eligibility for Medicaid and simplify processing. While no program is perfect, millions of citizens would be unable to receive health services in America without Medicaid.
You can learn more about Medicaid on The Arc of Bartholomew County's website: https://www.thearcbc.org/resources-and-tools/medicaid-and-medicaid-waivers/
Medicaid Waivers
One aspect of Medicaid that is particularly important to children with intellectual and developmental disabilities and their families are Medicaid Waivers.
In decades past, it was generally accepted that caring for children who have disabilities at home would not be possible or prudent. This misunderstanding caused countless children to be institutionalized.
Institutionalization was incredibly costly, people lost their freedom to live an independent life. Financially, maintaining and staffing these facilities became a major cost for state and federal governments as well. To avoid these problems, Home and Community Based Services (HCBS) Waivers were introduced.
These waivers allow people who, in previous decades, would have been institutionalized to receive services at their homes. This development drastically improved prospects for individuals with disabilities and helps many families avoid poverty despite the high cost of care for a child with a disability.
You can learn more about Medicaid Waivers on The Arc of Bartholomew County's website: https://www.thearcbc.org/resources-and-tools/medicaid-and-medicaid-waivers/
Medicare
The final federal program focusing specifically on healthcare is Medicare. Medicare is primarily for individuals 65 years old and older.
However, individuals who receive Social Security Disability Insurance (SSDI), which is described later in this training, for more than 24 consecutive months are also eligible to receive Medicare.
There are four basic parts to Medicare and each part covers a specific aspect of healthcare:
Part A: Hospital Insurance - This part covers short-term stays in hospitals.
Part B: Medical Insurance - Part B covers doctor visits and similar activities that are typically covered by health insurance.
"Part C": Medicare Advantage - Medicare Advantage plans are private plans which bundle Parts A and B (and often Part D). These plans often cover additional services (like Dental and Vision) that you wouldn't get if you chose other parts of Medicare outside of a Medicare Advantage Plan.
Part D: Prescription Drug Coverage - The final part of Medicare covers the cost of prescription drugs.
There are a variety of options and plans for Medicare and it's important to weigh the options. It's possible to receive the same or similar coverage for a drastically different monthly cost.
Supplemental Security Income (SSI)
Supplemental Security Income (SSI) is a program managed by the Social Security Administration (SSA). It provides payments to low-income individuals who are blind, disabled, or over the age of 65.
Unlike several other major federal programs (like Medicare or Social Security Retirement benefits), SSI is funded through general taxes rather than employment taxes.
In many states, Indiana included, a person who is eligible for SSI is also eligible for Medicaid. To simplify eligibility processing, a person receiving SSI can be found eligible for Medicaid while skipping some of the more tedious application steps, like providing verification of income and resources, since they've already been determined eligible for SSI.
As is often the case for individuals with a disability and their families, the transition from childhood to adulthood comes with new challenges related to benefit programs.
When a person turns 18, he or she may be eligible for benefits in a different way than what they may have been eligible for just a year earlier. To maintain benefits, it's important that these individuals and their families plan for this transition.
Additional information about SSI can be found on The Arc of Bartholomew County's website: https://thearcbc.org/resources-and-tools/supplemental-security-income
Social Security Disability Insurance (SSDI)
Social Security Disability Insurance (SSDI) is an insurance program that makes payments (primarily) to individuals who previously worked and have become disabled.
Similarly to how retirement benefits through the Social Security Administration (SSA) are calculated, a person must earn a certain number of work credits to become eligible for SSDI. The credit requirement increases with age and has a rolling window of eligibility.
What many don't know is that a child or grandchild can receive SSDI payments if they are disabled and their parent or grandparent is receiving benefits from the SSA.
The parent or grandparent need not be disabled for payments to be made to their children, they can even be eligible if the parent or grandparent is receiving retirement benefits through the SSA.
One goal of SSDI is to help individuals who become disabled avoid poverty. Another goal is to help these people find ways to work so they can earn an income above the income provided through SSDI.
There are work incentives built into the program to make this transition easier like Trial Work Periods, Extended Periods of Eligibility, and Impairment Related Work Expenses.
Further details about SSDI can be found on The Arc of Bartholomew County's website: https://thearcbc.org/resources-and-tools/social-security-disability-insurance
First Steps
Indiana's early intervention program is called First Steps and serves children from birth to the child's third birthday. For children who have developmental delays or disabilities, early intervention programs can have a major effect on the child's long-term quality of life.
There are a variety of services and therapies for children who participate in First Steps, many of which will be described later in this training. Through the First Steps program, an Individual Family Service Plan (IFSP) may also be created. This plan will described later in this training as well.
Additional information about First Steps can be found on The Arc of Bartholomew County's website: https://thearcbc.org/resources-and-tools/first-steps
Pre-Employment Transition Services (Pre-ETS)
Students with disabilities can receive additional services through a program called Pre-Employment Transition Services (Pre-ETS). Pre-ETS was established through the Workforce Innovation and Opportunity Act (WIOA).
The program provides various services to individuals aged 14 to 22 related to employment.
Job exploration counseling helps students understand what types of employment align with their interest and abilities.
Work-based learning experiences, like apprenticeships and job shadowing, give the recipient a chance to see what the day-to-day is like in jobs they may be interested in pursuing.
Postsecondary opportunity counseling takes a deeper look at college and similar options, including the supportive services that will help the recipient thrive during their postsecondary education.
Workplace readiness training helps develop soft skills required to be successful when employed. Additionally, the program provides instruction in self-advocacy, so recipients can understand their rights when it comes to employment and how to advocate for themselves in the workplace.
Additional information about Pre-ETS can be found on The Arc of Bartholomew County's website: https://thearcbc.org/resources-and-tools/pre-employment-transition-services
Vocational Rehabilitation (VR) Services
Vocational Rehabilitation (VR) is a program designed to help individuals with disabilities find and retain employment.
Following a mentor/mentee model, a VR service recipient meets with a counselor to identify an individual's skills and potential places of employment that would be good fit for them.
Individuals with a variety of disabilities and conditions can be eligible to receive VR services including autism, Down syndrome, post-traumatic stress disorder, and even learning disabilities.
The support provided by the program is tailormade for the client and focuses on helping individuals find and pursue situations where they'll be able to thrive.
Further details about VR Services can be found on The Arc of Bartholomew County's website: https://thearcbc.org/resources-and-tools/vocational-rehabilitation-services
Services and Therapies
A person with intellectual or developmental disability may require a variety of services and therapies at different points of life.
Each of the following serves a specific purpose and aims to improve quality of life for the person receiving services and that person's family or caregivers:
Case Management
Developmental Therapy
Applied Behavior Analysis (ABA) Therapy
Speech-Language Pathology / Speech Therapy
Occupational Therapy
Physical Therapy
Respite Care Services
Recreational Therapy
Case Management
When a child is born with an intellectual or developmental disability, parents experience a variety of new challenges.
They have to understand the medical diagnosis, cope with the emotional challenges resulting from an unexpected lifestyle change, and navigate the complicated assistance programs and services that may need to be utilized.
This isn't an easy task and it can be helpful and to have the assistance of an expert. Given the vast amount of knowledge required to provide care for a person with a disability, the experience, relationships, and wisdom a case manager brings to the table is invaluable.
Case managers help individuals and their families manage their healthcare across service providers, therapies, and resources they may need.
These professionals help families advocate for the help they need and make sure they get those services in a timely fashion. Effective case management can also help families minimize healthcare costs.
Developmental Therapy
Developmental therapists aim to understand the total view of an individual's development. They seek to understand where a person is experiencing issues and take steps to improve those areas.
When children have developmental delays, the impact extends beyond the specific area of delay. For example, a child who hasn't developed the fine motor skills to manipulate their environment misses the opportunity to learn from that process.
He or she may not experience the emotional development (self-confidence) when one gains control over their body and objects around them.
Developmental therapy doesn't necessarily stop at early childhood either. A person experiencing difficulties at school or work may also benefit from the services provided by a developmental therapist.
Applied Behavior Analysis (ABA) Therapy
Applied Behavior Analysis (ABA) Therapy is a type of therapy designed to address behavioral needs for a variety of individuals and situations. Rather than using punishment to encourage effective behavior, ABA therapy employs the use of positive reinforcement.
One aspect of this therapy revolves around social behaviors like communication and self-management in social settings. ABA therapy may also involve teaching day-to-day skills, like maintaining personal hygiene.
ABA therapy is commonly used as a therapeutic treatment for individuals with autism. It can be used to serve individuals with dementia, anxiety issues, and a variety of other conditions as well.
Speech-Language Pathology/Speech Therapy
Speech-language pathology focuses primarily on a person's verbal communication and is often referred to as speech therapy. A speech therapist assists with other oral issues, like feeding problems, and can help a person with language development.
However, the benefits of speech therapy aren't limited to communication. Improving a person's ability to communicate can improve his or her emotional development as well.
For example, enhanced social interactions due to improved verbal communication helps a person form relationships, setting the stage for independence.
Like most therapies, individuals who need speech therapy benefit from early intervention. An unaddressed speech issue becomes harder to resolve as time passes.
Occupational Therapy
Occupational Therapy (OT) helps an individual develop the skills to complete day-to-day activities or occupations.
OT benefits individuals in many different situations, from a child who has a developmental disability or sensory issues to an adult recovering from an accident.
An occupational therapist may help a client accomplish self-management actions like bathing or getting dressed. These types of activities are referred to as activities of daily living.
Fine motor skills, like handwriting or using a computer, might also be part of a therapy plan developed by an occupational therapist. Therapists can also identify assistive technology that would benefit a person with an intellectual of developmental disability.
Physical Therapy
Physical therapists address a wide variety of issues for people from all walks of life. Properly administered physical therapy (PT) has lasting impacts on a person's quality of life.
PT is similar to occupational therapy (OT), but has a few differences. Common goals for a PT program may include regaining strength and flexibility after an injury. Physical therapists help people with pain management too.
As mentioned in the Developmental Therapy section, developmental delays can cause other issues to surface. This might manifest in problems related to how a person walks, known as their gait.
Children with developmental disabilities can utilize PT to help improve their ability to balance, improve gait mechanics, and manage or resolve many other physical difficulties.
Respite Care Services
Taking care of individuals with intellectual and developmental disabilities is a serious undertaking. For individuals who aren't wealthy and can't afford to hire a caregiver, it's similar to a job where no pay is received and the work doesn't stop, even on vacation.
It's not uncommon for parents of children with special needs to feel an internal conflict. Despite the enormous amount of work that's required to be a full-time caregiver, a parent feels responsible for providing the best care for their child.
Often a little time away to tackle a few lingering to-dos or simply having some time alone to recharge can make a big difference in a parent's life.
Respite Care services are designed to help caregivers get this sort of relief. These services are organized to provide a paid caregiver for a period of time whether that be an afternoon, for several days, or longer. Pursuing respite care assistance can improve caregiver mental health and improve an entire family's resilience.
Recreational Therapy
Recreational therapy uses leisure activities as the therapeutic environment. These activities may occur in individual or group settings and are designed to improve physical, social, and emotional development.
Through casual (and frequent) use, skills are built that can translate directly to daily life. Fine motor skills, like using scissors, can be developed while making simple crafts.
Social skills can be enhanced while playing a game with teammates. Creativity may be improved by solving puzzles with the careful guidance of a therapist.
Given the large amount of time that might be necessary to achieve therapeutic outcomes, a recreational approach may enhance motivation for the participant. A motivated participant is more likely to enjoy the process and continue therapy when plateaus occur.
Documents, Forms, and Plans
The government programs, discussed earlier in this training, include tremendous amounts of detail and complexity. To mitigate these difficulties documents, forms, and plans are created at various points to help individuals and families move through the process.
This section will discuss several of those documents one is likely to come across:
Developmental Monitoring, Screening, and Milestones
Individual Family Service Plan (IFSP)
Individual Education Program (IEP)
Individualized Plan for Employment (IPE)
Medicaid Waiver Forms
Developmental Monitoring, Screening, and Milestones
Parenting comes with many responsibilities. One of the most important responsibilities, is making sure a child develops appropriately for his or her age.
If there are developmental delays, then it's important to notice them and determine if additional support is required.
The Centers for Disease Control provides many resources (including a smartphone application) to help one track a child's progress in the early years of life.
Developmental milestones are the recommended guidelines for progress. Parents should notice a child meeting these guidelines or the child may have a developmental delay.
Developmental monitoring is the informal process of tracking a child's progress relative to developmental milestones.
Lastly, developmental screening is a more formal review of a child's progress conducted by someone with experience in child development.
Additional details and resources can be found on The Arc of Bartholomew County's website at: https://www.thearcbc.org/resources-and-tools/developmental-monitoring-screening-and-milestones
Individual Family Service Plans (IFSP)
The Individual Family Service Plan (IFSP) is one of the first documents families use to plan for a child's needs.
This plan serves children from birth to age three who have been identified as having a developmental delay or being at risk for experiencing a developmental delay.
It's developed to highlight which early interventions are necessary for the child to help them make progress in areas where they need additional help. The IFSP is typically created while the child participates in the state's early intervention program (in Indiana this program is called First Steps).
IFSPs cover a variety of developmental and support topics and are quite detailed. They include references to the different service providers for each relevant development area, strategies the family can employ to aid progress, and much more.
A blank IFSP form can be downloaded from the Family and Social Service Administration (FSSA) website (pdf): https://forms.in.gov/Download.aspx?id=5289
Individual Education Program (IEP)
The Individual Family Service Plan (IFSP) focuses on early intervention services for children up to their third birthday. Once a child who turns three, he or she may benefit from another type of plan to support them while participating in the public education system.
The Individualized Education Program (IEP), is designed to support children from three to age 21. IEPs create a special education plan for a particular child.
The program is reviewed every year to make sure the child is receiving the support he or she needs.
The goal of the IEP is to help the child receive a "free appropriate public education" in the "least restrictive environment." This means the child can receive the services they need at no additional cost and, as often as possible, these accommodations should be available without the child being removed from the classroom. Children who have IEPs and those that don't both benefit greatly from being able to learn together in the same classroom.
Further details about IEPs can be found on the Department of Education's website: https://www2.ed.gov/parents/needs/speced/iepguide/index.html
Individualized Plan for Employment (IPE)
The Individualized Plan for Employment (IPE) is a document that participants in Vocational Rehabilitation (VR) Services create with the assistance of their VR counselor.
It includes details that help find employment opportunities which are tailored to the individual's desires and capabilities. While the individual works with a VR counselor, his or her plan is continually updated.
Once the person's skills and abilities are understood, he or she will work with the VR counselor to identify potential employers. Counselors have experience with a variety of industries and jobs that could be a good match for participants in the VR program.
As the list of potential employers is narrowed down, details about which “services, service providers, and supports” would be useful while employed are considered.
The comprehensive document helps communicate the needs of the person receiving VR services to the employer. With proper understanding of accommodations, the IPE can be an invaluable tool in improving employment outcomes.
Medicaid Waiver Forms
Applying for Medicaid Waivers requires several special documents. These documents are in addition to the forms required to apply for Medicaid.
As of early 2021, individuals who wish to apply for Medicaid Waivers can begin the process online through the Bureau of Developmental Disabilities Services (BDDS) online application gateway.
In Indiana, there are three primary forms used for the application for Medicaid Waivers:
Application for Developmental Disability Services: This is a one-page form used to apply for the program.
Confirmation of Diagnosis: This form is signed by a Medical Doctor (MD) or Doctor of Osteopathy (DO) which confirms a medical diagnosis.
Authorization for Disclosure of Personal and Health Information: The final document provides consent for Developmental Disability Rehabilitation Service (DDRS) personnel to receive medical records from the applicant's doctors.
Additional information about the Medicaid Waiver Forms can be found on the Arc of Bartholomew County's website: https://thearcbc.org/resources-and-tools/medicaid-and-medicaid-waivers
Financial Services
Individuals with Intellectual and Developmental Disabilities and their families require additional financial planning when compared to the general population.
This section will explore a few financial tools that help individuals afford additional services and meet their goals. The following financial services and tools will be explored:
Achieving a Better Life Experience (ABLE) Accounts
Special Needs Trusts (SNT)
Pooled Special Needs Trust
The Arc Master Trust
Achieving a Better Life Experience (ABLE) Accounts
The Stephen Beck Jr. Achieving a Better Life Experience Act of 2014 introduced a new type of account for individuals with disabilities, Achieving a Better Life Experience (ABLE) Accounts.
The primary purpose of ABLE accounts is to allow a person to save money while remaining eligible for Medicaid and Supplemental Security Income (SSI).
For many assistance programs, a person isn't eligible if they have too much money in a savings account, for example. These rules make it difficult to retain employment while still getting help with the extra expenses that come from having a disability.
ABLE Accounts are considered exempt or uncountable for Medicaid and SSI. There are rules that limit how large the accounts can grow while still being ignored for eligibility purposes.
For SSI, ABLE accounts are exempt as long as the balance remains below $100,000. In Indiana, Medicaid considers an ABLE account exempt regardless of its size.
The Indiana version of ABLE accounts, INvestABLE, won't allow the account to hold more than $450,000.
These savings can be used to pay for disability-related expenses (e.g., assistive technology) and general living expenses (e.g., rent and utilities).
A benefit of ABLE Accounts, compared to some of the financial tools that will be discussed later in this training, is the fact that they don't require a lawyer to open. It's as easy as opening an online bank account.
There's a lot more to ABLE Accounts that you may be interested in learning. A more detailed explanation of ABLE Accounts can be found on The Arc of Bartholomew County's website: https://thearcbc.org/resources-and-tools/achieving-a-better-life-experience-account/
Special Needs Trust (SNT)
Prior to the creation of ABLE Accounts, a common financial tool for individuals with disabilities was the Special Needs Trust. While still in use today, many people can get similar or enhanced benefits from ABLE accounts.
As the dollar value of assets increases, it becomes more complicated to retain those assets while still being eligible for assistance programs.
Trusts are a legal structure that binds a person to act in a certain way. The person receiving the benefits from assets held in the trust is called the trust's beneficiary and the person required to administer the trust is called the trustee. The person who creates the trust is called grantor or settlor.
Commonly people associate trust accounts with wealthy individuals, but there are situations where people who own a more moderate amount of assets might benefit from a trust, such as a special needs trust.
Just like an ABLE account, the special needs trust allows a person to continue receiving benefits from assistance programs while enjoying lifestyle benefits from a larger amount of assets than they would otherwise be able to keep.
Unlike ABLE Accounts, special needs trusts are a little bit more difficult to create and manage, but may be worthwhile in individual circumstances. Consulting a lawyer who specializes in disability law can help determine what makes the most sense given a person and their family's assets.
Pooled Special Needs Trust
One of the benefits of a trust is the ability to be administered by someone other than the beneficiary. A Pooled Special Needs Trust takes this one step further by having a group of individuals act as the administrator or trustee of the special needs trust. Additionally, there may be benefits from having pooled or grouped resources for investment purposes.
A Pooled Special Needs Trust keeps a record of the amount of money a person has contributed to the trust and earns from investments. These subaccounts allow the beneficiary the benefits of a Special Needs Trust while simplifiying trust management considerably.
For example, the trustee of a special needs trust may find it difficult to continuing managing the beneficiary's money for the rest of his or her life. With a pooled trust, this burden is managed by full-time professionals and management will continue indefinitely.
Just like a Special Needs Trust and ABLE Accounts, the purpose of a Pooled Special Needs Trust is to allow an individual to continue receiving benefits from a public assistance program while accessing a higher quality of living.
The Arc of Indiana Master Trust
The Arc of Indiana created a Pooled Special Needs Trust called The Arc of Indiana Master Trust. The trust, known as Trust I was first established in 1988.
A few years later, in 1995, a change in laws allowed trust beneficiaries to add their own money to Pooled Special Needs Trusts. This new law allowed a new trust to be created, Trust II.
Both trusts are in operation today and can be opened without minimum deposit requirements.
Learn more about The Arc of Indiana Master Trust at the following website: https://www.thearctrust.org/
