Pay Attention! Change is Coming

There are many changes coming down the pike regarding those with developmental disabilities and the settings in which they live and work. Consumers of these services, as well as their families, need to understand what will occur over the next several years. But first, let’s get an understanding of the “alphabet soup” of all the agencies involved in the change.

The following information and more can be found at:

Office of Developmental Programs in PA: (ODP) The mission of the Office of Developmental Programs (ODP) is to support Pennsylvanians with developmental disabilities to achieve greater independence, choice and opportunity in their lives.  Four waivers related to this office are:

  • Consolidated Waiver
    (to read about pertinent changes to the Waiver Program as of July 2016 visit the Office of Developmental Programs Page)
  • Person/Family Directed Support Waiver
  • Adult Autism Waiver
  • Office of Developmental Programs Home & Community Based Services (HCBS) Final Rule

Department of Human Services (DHS): The Department of Human Services of PA consists of six executive level offices and seven different program offices. ODP is one of the program offices.

Centers for Medicare and Medicaid Services (CMS) CMS covers and regulates Medicare, Medicaid, the Children’s Health Insurance Program, and the Health Insurance Marketplace. It is a federal program.

Home & Community Based Waivers (HCBS) Through the advocacy of many family members and professionals, Congress created the “Home and Community Based Waiver Program” in 1981. The Waiver program permits services and supports to be provided in the community and to be paid for with Medicaid funds while “waiving” a number of institutional requirements. For example, if an individual is leaving an institution to live in the community, those funds that are no longer going to be paid to the institution; the funds are “waived” into the community.


CMS Final Rule: The following information is taken from an Achieva Newsletter 6/2016. This will affect all those with developmental disabilities and their families.

On January 16, 2014, the Centers for Medicare and Medicaid Services (CMS) issued a final rule for Home and Community-Based Settings (HCBS). The CMS HCBS rule became effective on March 17, 2014 and applies to the settings in which ODP waiver services are provided. Per CMS guidelines, all states must be compliant with the regulations by March 2019.

The purpose of the CMS HCBS rule is to make sure individuals receive services in settings that are integrated in the community and individuals receiving services have access to community resources equal to that of those who do not receive services. Individuals receiving services should be able to:

* Have opportunities to seek employment and work in competitive and integrated settings.
* Engage in community life.
* Control personal resources.
* Obtain services in the community. 

The rule also aims to make sure individuals receiving services have free choice of where they live and what provider to choose as long as the providers is willing and qualified. The CMS HCBS Rule also ensures that each individual’s rights are not restricted and clarifies that services will not be allowed in settings that have the qualities of an institution.

The rule’s settings requirements apply to each of ODP’s 1915(c) waivers. The three waivers offered by ODP are the Adult Autism Waiver, the Consolidated Waiver and the Person/Family Directed Support (P/FDS) Waiver.

Waiver Specific Transition Plans
As part of the implementation of the CMS HCBS Rule, ODP is required to submit a transition plan for each waiver to CMS detailing the steps the state will take to come into compliance with the regulations.

In addition to participants having choice among providers – already a requirement for HCBS services − the new rules require that HCBS participants must also be offered a choice of a non-disability specific setting as part of their person-centered planning process. Examples of non-disability services settings include a person living and receiving services in his or her own apartment or home instead of a group home, or working and receiving employment supports in a typical job in the community instead of in a sheltered workshop. State transition plans will likely need to include steps to create additional capacity so all participants can be offered a choice of residential and day services in nondisability specific settings. 

For more information about the HCBS settings rules, see or

After reviewing the information above, it is apparent that inclusion in the community for all those with disabilities is a mandate of the federal government; all states must comply but each state has to develop its own transition plan to meet these requirements.

The rule is a welcome change for many individuals. It may signal the end of the remaining state centers in PA. Individuals living in these settings are generally isolated from surrounding communities.  It may also mean that there will be more specific plans in IEP’s to prepare individuals for life in the community. It opens the door for all those who want to work and live in the community to do so.  The main problem is, as always, funding. Will families get needed funds to keep their adult child in their home rather than a group home?  Will there be funds for more promising, innovative ideas for living and working in the community?  This rule will inspire all of us to be more creative in the future in developing jobs and housing for those with disabilities.

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There are many questions that individuals and families will be asking regarding the Rule. But, for now, these are the following questions that consumers may consider the HCBS is open for public comment in the fall of 2016 (no date yet).

  1. I would love to work in the community-how will I find an employer that will hire those with disabilities?
  2. My son/daughter has safety issues and goes to a sheltered workshop for 6 hours a day, 5 days a week. If this is considered a non- inclusive setting, where will my son/daughter go every day for work?  And who will be the caregiver when my son is working in the community?
  3. I am on the Spectrum, gone to many interviews but no job, who will assist me in finding an employer who will hire me?
  4. I live with my mom but I want to live on my own; I don’t make a lot of money so where can I find affordable housing?
  5. My son/daughter lives in a group home, needs 24/7 care, will this setting be deemed non-inclusive? If so, where will he/she go? Also what will happen in the future when family members cannot take care of their loved ones at home anymore if group home settings are fazed out?
  6. My husband and I work and take care of my adult son who is on the spectrum. He cannot be left alone at home-he is 40 years old. We will retire soon and feel we can no longer take care of him. Where can he go where he will be safe and also motivated to be a productive individual?

Questions about funding, family support, lack of job opportunities (particularly in rural settings), reasonable choices for those who will require 24/7 support, individuals who don’t understand the concept of choice, the list goes on and on.

In answer to an email sent to the Deputy Secretary of ODP, Nancy Thaler, states “We have created a work group of people representing all stake holders to work on standards with us. While there may be some facilities that cannot meet the regulatory requirement, we anticipate that with the modifications to programs and activities, many existing programs will be able to meet the standards.”

If an agency has closed programs anticipating the changes, Ms.Thaler states they have “jumped the gun”.

Speak up if you have questions-let your voice be heard. Find out where and when the comment on this Rule is going to take place. Register to speak or send in your comments. Whether consumer, family member, or friend-your voice can make a difference as to how Pennsylvania will implement this transition plan now and in the future.

This post brought to you by: Linda Marino, Critical/Special Needs Coordinator | Jewish Family & Children’s Services

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