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Adult Parent or Guardian

A Guide to Services for Special Needs Adults–An Overview

This is blog post is one in a series by contributing blogger Heather Johnson.


Once you have your waiver, you are eligible to start receiving services. This blog series will explain and explore some of the more popular services, but before we get into specifics, here are some general things to know:

*If your waiver has a cap, you cannot go over that amount of money. This sometimes means making hard choices, such as between summer camp or respite. Also, keep in mind that if you are at the cap, you still might have to make hard choices in July when the new fiscal year begins, because services can increase in price between one year and the next. Always be prepared to have to re-evaluate your services regularly based on cost.

*Putting services in place is not a fast process. Usually it takes three to six weeks to begin services. The first thing that happens is you’ll have a meeting with your supports coordinator (SC) to discuss what the needs are and what options are available. Next, your supports coordinator will send out referral packets to provider agencies, which basically serves to give basic information about the individual to see if the provider has vacancies or a staffing match. After that has been established, you’ll either take a tour of the facility so everyone can meet each other, or have an intake meeting at home. If everyone on the team agrees, a start date will be established. The SC will then do what is called a critical revision to the individual support plan (ISP) to start the service, and submit it to the county. The county Administrative Entity (AE) requires at least ten business days to approve a service; keep that in mind when beginning services. In emergent situations this can be circumvented, but is not recommended.

*You will not get paid money from the county or federal government. Many people have the idea that they will get a lump sum of money to spend as they see fit. The process is this: once you have a service in place, the provider bills the waiver directly. There are some options for more control in terms of hiring staff or becoming an agency-with-choice provider, which are very complicated but work for some incredibly organized individuals with time to invest. For more information on PPL (a company that provides alternative service arrangements) and agency-with-choice (AWC) providers, reach out to your supports coordinator.

*Primary caregivers, in the majority of situations, cannot also be staff. Unfortunately, you can’t be paid to provide care to your child. Sometimes a family member can get hired by a provider to provide services, but rarely ever the primary caregiver.

*There are sometimes qualifications that have to be met before certain services can be provided. For example, if an individual should need nursing, a letter of medical necessity is required from the doctor as well as a denial letter from the insurance company. For job services, the person must have gone through the office of vocational rehabilitation (OVR) and obtain documentation that either the 90 days of services have been used or the person is not a good fit for OVR. The reason for this is the waiver is the payer of last resort-if there are any other possible funding streams for any service we have to attempt to go that route first.

*Consolidated waivers are incredibly scarce. It’s a lovely idea to have your adult child fly out on their own by moving into a community living arrangement (called a CLA or group home) and having a job while you still live at home and are healthy, and ideally, that would happen for everyone. Unfortunately, there just isn’t enough money to go around. Right now, some people in dire situations do not have services because funding is not available. If an individual is safe where they are, they will not be prioritized for community placement. I apologize for the harsh truth; the funding is controlled at the government level. If we as a community really want change for our adult loved ones with disabilities, we all need to get on the phone with our legislators and demand funding for Medical Assistance, it’s the only way to get the money we need.

As always, should you have questions about waiver funding you can contact your Supports Coordinator, your county Administrative Entity, or me.

Heather Johnson is a Supports Coordinator Supervisor at The Arc Alliance, a nonprofit organization supporting families and individuals of all ages with developmental and other disabilities. In addition to her personal experience as a family member of those with special needs, she has been working for 18 years in all areas of the special needs community. Heather is one of the guest bloggers who will periodically post information for Kokua Network members.

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Kokua Network Answers: What is the ABLE Act?
By Steve Potts, Founder, Kokua Network

Passed by the Federal Government in December of 2014, the "Achieving a Better Life Experience Act," or ABLE Act is a landmark bill that will affect how disabled individuals and their families manage finances.  The ABLE accounts have been compared to 529 education savings accounts for disabled individuals.  Each state must adopt their own version of the act, and most state legislatures are currently working to make the ABLE Act a reality.

Prior to the adoption of this Act, saving money for a person with special needs could be difficult and required forming a Special Needs Trust.  That is because individuals who receive government benefits must keep their assets titled in their name or for their benefit under a certain amount.  Those special needs trusts protect the assets from being a countable resource when determining benefits but they have an expense in setting them up  and the money in them could only be used for certain purposes.  Per the ABLE Act, so long as the ABLE account balance remains under $100,000, the money in the account will not be counted by the government as an asset of a disabled individual in assessing eligibility for resource-based benefits.  And the fee in setting up an ABLE Account will likely cost less (although that remains to be seen).  If the ABLE account were to exceed $100,000, SSI would be suspended, though not terminated, but medicaid would remain unaffected.

An ABLE account opened for a disabled individual is less restrictive than a Special Needs Trust in how the funds can be used; most notably, the money in an ABLE account can be used for housing whereas money in a Special Needs Trust cannot without having an effect on benefits.  Anyone can contribute to an ABLE account, including the disabled individual.  If a disabled individual works and earns money or is the recipient of an inheritance, that money can be invested in an ABLE account and their government benefits can be protected.  Earnings on an ABLE account will not be taxed, though contributions to the account are not tax deductions.

This form of saving will not completely replace the Special  Needs Trust - it is only available to individuals whose disability occurred before age 26 and does have contribution limits which will be determined by State Legislatures.  Further, a big disadvantage is that funds in an ABLE account are subject to medicaid payback, whereas funds in a Third Party Special Needs Trust are not.

Used in conjunction with a Special Needs Trust, an ABLE account will provide an excellent way to protect the needs of your loved ones with disabilities.  In most situations, investing in both can maximize your loved one's government benefits while minimizing tax exposure and the potential for paying money back to the government.  Take our Special Needs Trusts bootcamps to learn more about them and if they are right for your family.

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What is a Waiver?

The following is a guest blog post by Kokua Network contributor Heather Johnson.

“Waiver” is a word that is bandied about a lot in the Intellectual Disabilities/Autism Services field. Waiver is actually short for Medicaid Home and Community-Based Waiver Program. When the government originally stepped in to provide funding for individuals through Medicaid, people were only being served in state-run institutions and similar centers. The waiver was created so that the federal government could “waive” the Medicaid rules for institutions and use those funds to provide services in the home and community instead.

Waivers are comprised of state and federal dollars. The contributions are not exactly even, not consistent across states and are adjusted each year depending on the budget. In Pennsylvania, the majority of services for individuals with an intellectual disability are funded through two types of Medical Assistance. Intermediate Care Facilities for Person with Mental Retardation (ICF/MR) are private or state-run institutions that are entitlements and cannot be capped or subject to waiting lists, although there are criteria for eligibility. Home and Community-based Waivers support people in their homes and/or the community. In Pennsylvania, there are two types of Home and Community based waivers, the Consolidated and the Person/Family Directed Services.

The Person/Family Directed Services Waiver, or P/FDS, is capped annually at $30,000. This is by far the more common waiver, and is generally used to provide day supports and transportation to individuals once they have aged out of the school system. Every year, the state government votes on a budget that allots a certain number of P/FDS waivers to graduates, called the Graduate Initiative. Most people with P/FDS waivers live at home with their families or on their own in the community.

The consolidated waiver is uncapped for individuals, meaning there is no top limit to the amount of funds available to pay for services. However, the statewide cost cannot exceed the cost of providing the same services in an ICF/MR. Therefore, there are far less consolidated waivers available for individuals and the waiting list is much longer. Consolidated waivers usually are used for individuals who live in a Community Living Arrangement (CLA or group home), Life-sharing, have intense medical needs or any combination of services that cannot fit under the $30,000 P/FDS cap.

There are many more waivers available to individuals depending on their diagnosis and specific need. For a comprehensive list of waivers available in Pennsylvania, you can visit Each waiver has different criteria and is designed to provide different services depending on the circumstances of the individual. The application also differs depending on the system providing the funding. Supports Coordination services are available once a person is registered with the county to help individuals and families navigate the process.

The unfortunate reality of the waiver system is that there are usually not enough funds to provide everyone with everything they want-we hope to provide individuals what they need to remain healthy and safe. However, there are many people (supports coordinators, providers, community resources, etc) who will help you advocate for yourself or your child in order to get access to funds. Waiting lists vary depending on the county, funding stream and application process, so it is always a good idea to look ahead into the future and be prepared early to get access to services.


Heather Johnson is a Supports Coordinator Supervisor at The Arc Alliance, a nonprofit organization supporting families and individuals of all ages with developmental and other disabilities. In addition to her personal experience as a family member of those with special needs, she has been working for 18 years in all areas of the special needs community. Heather is one of the guest bloggers who will periodically post information for Kokua Network members.


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Services Throughout Life: A Guide to Getting Started

The following is a guest blog post by Kokua Network contributor Heather Johnson.

In an ideal world, a child’s case manager and therapists would remain the same from the very first diagnosis until retirement. It’s frustrating to have to get a person reassessed and explain that person’s story, needs and progress to a new person at every new phase of life. Unfortunately, funding streams change as your child ages. Knowing where to begin is sometimes the hardest challenge. This blog is in no way a comprehensive guide to all of the service options available to you, but rather serves as a jumping off point; a place to begin.

Birth-3     Early Intervention
When you start to suspect your child might need some additional supports, the first thing to do is get him or her assessed. Your family doctor is a good place to start, however, you can also go through your county Mental Health/ Mental Retardation (MHMR) department. This assessment will determine what services your child needs, such as occupational therapy, physical therapy, speech/language support, hearing and vision support, and behavior services. Identifying your child’s need early and beginning services at this age is crucial; many symptoms and characteristics of many disability diagnoses can be alleviated or reduced if they are treated early.

Age 3-5     Preschool
After your child has aged out of early intervention but before he or she has started kindergarten, services are accessed through your county’s intermediate unit if the child has a diagnosis of Intellectual Disability. The intermediate unit can help your child continue the services they had in early intervention, as well as re-assess to see what needs have been met and what still needs support.

Not all children who are eligible for services in Early Intervention qualify for preschool supports, so getting a new assessment at this time is critical. If your child does not qualify for services through the intermediate unit but you still feel supports are necessary, don’t give up! Most qualification decisions can be disputed, or services may be funded through private insurance. If you hit a road block here, reach out to your local advocacy group for help.

Age 5-21     School
Once your child is in school, the district is required by law to meet his or her instructional needs, whether it is one of the services listed above, or others such as adaptive equipment, specialized instruction, or placement in a private school. Unfortunately, it can sometimes be a fight to get these services in place. Educational advocates are available to help you navigate through any problems, if necessary.

If your child has an ID diagnosis, another resource for you now is supports coordination services,. To register with the county for these services, call the intake specialist. You’ll have to meet with the specialist, provide documentation, and choose your supports coordinator, who will help you to create your child’s Individualized Support Plan. Although the school district is responsible for providing services, your supports coordinator can help you find things like activities, summer camps, support groups, advocates, and in some cases help with funding assistance.

If you don’t choose to register your child with the county during elementary and middle school, please do so by the time her or she turns 18. The better the county is aware of your situation post-graduation, the more likely your child is to receive funding, and your supports coordinator can help you through the transition from school to adult life.

21 and on     Adulthood
Once your child turns 21 her or she is no longer entitled to any services. The state and federal government have funding programs, called Waivers, to help pay for services your child will need to lead a normal life, such as day programs, residential placements, in-home supports, transportation and respite. These funds are allotted based on need, and the availability of funding will change based on government officials, number of people applying, etc. Financial qualifications need to be met to be eligible for these funds, including receiving medical assistance and having assets below $2,000. Your supports coordinator will help you apply for funding and set up services.

It’s a long and frustrating road to travel, but please know you are not alone. We are a strong, well-connected and knowledgeable community; help is always available to those who need it. If you need individual assistance or have further questions, you can always contact me, Heather Johnson, from The Arc Alliance, at 610-324-8307 or


Heather Johnson is a Supports Coordinator Supervisor at The Arc Alliance, a nonprofit organization supporting families and individuals of all ages with developmental and other disabilities. In addition to her personal experience as a family member of those with special needs, she has been working for 18 years in all areas of the special needs community. Heather is one of the guest bloggers who will periodically post information for Kokua Network members.

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Housing Concerns For Individuals

Housing Concerns For Individuals With Disabilities

Among the most important values and goals shared by people with disabilities, their families, and advocates are being part of the community and living as independently as possible. A home of one’s own – either rented or owned – is the foundation of freedom for people with disabilities. As those with disabilities age, several questions about their future care become relevant: Will he or she ever be able to move out of the family home? With whom will they live? Where will they live? Who will take care of them?

Trying to coordinate housing for those with disabilities can often be challenging. Preparing for home living means more than simply finding a place to live. Home living takes into account any supportive services that person might need, for example, healthcare and medication management, financial management, social and recreational needs, mobility issues, legal rights, self-advocacy, and transportation concerns. Also, It may be difficult for a family to imagine their child living on his or her own.

The first step in the process is to talk about visions for the future from the viewpoints of both the family and the disabled person. Even though starting this process at age 14 may seem premature to some families, it is important to begin this process then, however, so the child’s future is centered on what is best suited for him or her. This type of planning for people with disabilities is called “Person-Centered Planning.” It is a way of thinking that focuses on the dreams, outcomes, and visions of the individual. It is a process guided by an individual’s and family’s unique vision, likes, and dislikes. Person-Centered Planning focuses on the people and families rather than programs, and is a way to bring together everyone important to the person: family, friends, neighbors, support workers, and other professionals. Some questions to keep in mind when assessing the individual’s needs and wants for housing include:

  • Where does the person want to live?
  • What do they need to be happy?
  • Can he or she live alone or is support needed?
  • How much support does he or she need now?
  • Are there any health and safety issues to consider?
  • Will they need to live close to family as part of his or her support system?
  • Would the individual like to live by him- or herself or with roommates?
  • What are the characteristics of those who will best support the person?
  • What kinds of housing options are available in the community?
  • What is the neighborhood like? Is the residence accessible? Is it affordable? Is it near transportation?

After gathering this information, the results will need to be discussed and a plan developed in order to see how housing might fit into the picture. Keeping in mind the person’s vision, it is important to identify the main considerations for achieving a desirable lifestyle:  What are the disabled person’s hopes and dreams? What level of independence does he or she desire and what supports will she or he need to achieve these goals? Some of the essential factors to consider are education, individualized training, successful employment, and an integrated life in the community. If the individual is unable to express their own opinions, those who know the person well, will have to consider their strengths and interests and make decisions for her or him. Because housing becomes an integral part of the vision and lifestyle plan, it is best to begin by asking the individual where he or she wants to live. If they have not had an opportunity to understand the differences in housing options, they may want to visit friends and families who live in different settings in the community.

Initially, the individual may not like the thought of leaving home. As with all children, moving out can be an exciting time, yet it can be a time of concern. Addressing the person’s joys and fears will be a necessary part of the process. Discussing fearful situations they might encounter being on his or her own can help to plan for social, safety, and economic concerns such as the ability to maintain the appropriate supports, separation from the family, vulnerability, social isolation, and the ability to be employed. It is important to examine what is making the individual fearful. Some fears may be realistic and others may not be. By networking with parents and friends, and actively seeking out information, some of these fears may be alleviated.

It is often difficult to find a place to live that is affordable, accessible, available, and where the person wants to live.  Also, additional supports for young adults are often complicated and costly. Each individual is unique. There is no model for obtaining housing and support.

Individuals with disabilities now have a greater choice than ever in where they can live. However, eligibility requirements can be strict due to limited funding. The following factors can have an impact on their options:

  • The individual’s resources — wages, trusts, Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), county services, Medical Assistance, Home and Community-based waivers
  • The family’s resources — financial commitment, time, energy, and networks
  • Community resource options — availability of suitable housing, community development, accessible housing, low-income or Section 8 housing
  • State resources — financial support, state housing agency and planners, state disability resources

Many new changes in the way a person with a disability can access housing and services have emerged and are being developed.  See Kokua Network's Residential Options Bootcamp here.

Once parents and their son or daughter with a disability have determined the most desirable and appropriate housing situation, the next step is to explore how much can be spent on housing. Creating a list of expenses is crucial. It is essential to look at possible income, Medicaid, SSI, SSDI, work income, and family contributions. There are no simple answers when it comes to obtaining payment for housing. Eligibility criteria for the individual’s specific disability will become a determining factor for most funding.

Much is involved when planning housing for an individual with disabilities.  It is important to plan early   and plan ahead so that options don’t become limited and affect the long-term vision. Limited funding, availability of supports, services, and affordable housing will also have an affect on options.

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