Your Roadmap to Independence: Tips to Navigate the Critical Phases of PUNS

Your Roadmap to Independence
Tips to navigate the critical phases of PUNS

Every parent of a small child worries about the danger of falls. Whether it’s falling from the top of a slide, the edge of the couch, the seat of a bicycle, or a hundred other situations, no parent wants to see it happen to their child. Just the thought of a child falling can cause anxiety for a parent.

There’s another type of fall, though, and the result can be a lot worse than a bloody nose or a scraped knee from falling off a bike. This is when a child with intellectual/developmental disabilities “falls off the cliff” by aging out of the school system and into adult services

According to a national online poll conducted by Bancroft, of parents with children ages 3-21 on the autism spectrum, over sixty percent said independence in adulthood was their top concern. However, less than twenty percent of those respondents had a plan to support their child in the transition from school to adulthood.

It is true that Medicaid provides services for those individuals until they are 21, but getting services is not an easy matter these days. There are limited slots for support waivers, and services are not guaranteed, or given on a first-come, first-served basis. As a practical matter, the aid you get is based on the urgency of your need, and many people end up on the waiting list. As of March 2018 there were 13,549 people with Intellectual Disabilities on the Waiting List for Intellectual Disability Services in Pennsylvania. This is not a satisfactory situation for any of those people.

“You don’t want to hear you are on a list,” says Achieving More Supports Coordinator John Montgomery. “You think you are doing everything right when you sign up five years out, and then the chances are high that someone with an emergency need can slip in and take that slot. It’s a vague system.”

Here is an outline of the three critical phases of PUNS (Prioritization of Urgency of Need for Services), with some tips to help you navigate each stage. PUNS is the statewide database used by County Intellectual Disabilities Programs to monitor individuals who are waiting for intellectual disabilities services and supports. The Office of Developmental Programs employs it as a requirement for annual County Plans and for use in program budgeting. It is important to enroll in PUNS in order to identify service needs and get a spot on the waiting list if necessary.

  1. Planning – For individuals who need services within several years (five years from graduation).

Develop a great Individual Support Plan (ISP) – The “Individual Preferences” section of the ISP should paint a full picture of the individuals today, and what they want their life to be in five years. What are their likes, goals and strengths? This is an essential tool for officials to understand the needs of the child. For example, “Mike looks forward to attending Special Olympics basketball on Tuesdays and has formed many friendships as a result. He enjoys baking classes in pre-vocational school, and has quickly established himself as a leader in the class, earning top grades for his work. On Saturdays, Mike goes to the movies with his older sister and they get pizza for lunch. Mike wants to work in a restaurant when he turns 18 and will need help with transportation.”

It’s important to be detailed and specific in the ISP. “If you say very little, that is what you are going to get,” says Montgomery.

Don’t get boxed in. Think broadly. A child’s needs might not be profound at the moment because he or she is living at home and getting support at school, but what happens after that child falls off the cliff? If you box yourself in, you might end up with a low amount of aid. Supports Coordinators (SC) at Achieving More advise discussing a variety of options. Remember that just because you express interest in something, it does not mean you are locked in to that program or service.

Know what services are available within each waiver. What services do you really need? Do you want your child living with you? Will you qualify for day support and transportation? What waiver will enable more independent living (e.g., residential services, life sharing and employment supports)?

“It’s important to start thinking about what you want your child’s future to look like,” says Montgomery. “It paints a picture of what supports are needed so we can identify the proper resources.”

  1. Critical – For individuals who will need services in more than six months but less than two years.

Show progress and a good fit. Invite the Supports Coordinators to the Individualized Education Program so they can work parallel with the school and advocate for pre-vocational. It is a huge plus if they can advocate for something that is already in place and working for the individual. If the ISP says, “Mike would like to do pre-vocation or vocational school the day he graduates,” the County has a reason to lock you into funding that will continue services that are already working.

“If you say you want employment supports, you might get base funding for the rest of your life,” Montgomery adds. “You have to have a plan. Understand what supports are out there and what your child needs for independence and quality of life.”

Get involved in the process. Read the ISP and make sure it accurately reflects what you wanted. In time you will get the PUNS in the mail, as well as a disagreement letter. Return the letter if you disagree with anything. Follow up! The family has to understand the process to make it work. The Supports Coordinator should be familiar with the individual, their family and the PUNS, in order to keep everything moving.

Update PUNS as needed. PUNS must be updated once a year, although it can be updated immediately if there is a death of a caregiver, a change of address or anything that would drastically change the individual’s need for services.

  1. Emergency – For individuals who will need services within six months or immediately.

Be a fierce advocate. Make sure that your Supports Coordinator is aware of your plan and advocating on your behalf in the system. It is critical to have someone monitoring your needs well before the Emergency Phase.

Take the proper steps in the even of illness or death of a caregiver. If this happens, a Supports Coordinator needs to explain to the administrative entity why the child needs to be moved to the Emergency Phase.

Stay on top of health and safety issues. If there is a health and safety issue where the child is alone or unsupervised, the Supports Coordinator needs to be made aware so they can advocate for services.

Are you worried that your child is getting close to the cliff?
• Think about where you can reach out for help, such as state legislatures, school administrations, and county agencies.
• Call your Supports Coordination Director to gauge whether they are aware of your child’s situation. Get reassurance that they are working hard on your behalf.
• Make sure everyone who should know about your child’s situation is well-informed.

Achieving More can help you navigate PUNS and build a bridge before you get to the cliff. Contact us today to connect to a Supports Coordinator to develop a plan for your child to become an independent adult.

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